November 21, 2008
Council Members Present
Edmund Pellegrino, M.D., Chairman
Floyd E. Bloom, M.D.
Scripps Research Institute
Rebecca S. Dresser, J.D.
Washington University School of Law
Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School
Michael S. Gazzaniga,
University of California, Santa Barbara
Robert P. George, D.Phil., J.D.
William B. Hurlbut, M.D.
Donald W. Landry, Ph.D.
Peter A. Lawler, Ph.D.
Paul McHugh, M.D.
Johns Hopkins Hospital
Gilbert C. Meilaender, Ph.D.
Janet D. Rowley, M.D.
The University of Chicago
Carl E. Schneider, J.D.
University of Michigan
SESSION 5: CONSCIENCE AND THE HEALTH CARE PROFESSIONS
CHAIRMAN PELLEGRINO: Good morning. Thank you, Council members. I think we'll begin this morning's session on the subject of conscience in the healthcare profession, a continuation of a discussion we've been having over several meetings.
Thank you very, very much. Our speaker is Holly Fernandez Lynch, who is an associate with Hogan and Hartson here in Washington, D.C. She also is the author of a very recent book on this particular subject, and we've invited her for her expertise in this area. Ms. Lynch ?
MS. LYNCH: Hi, everyone. I want to thank you all for the opportunity to speak to you today. It's great to be called the expert in anything after a year as an associate at a D.C. law firm. I've sort of become used to not knowing much about really anything at all.
So I'm really pleased to talk to you today, and I do have to give the disclaimer that my views that I express today are my own and shouldn't be attributed to Hogan & Hartson or its clients.
So I want to get right into things today because,more so than my presentation, I'm interested to hear what you all have to say. I want to continue the discussion you began back in September on this topic and see if we can move things forward a bit more.
Just to give you a brief overview about what we'll be talking about, I want to briefly describe why I don't think legal arguments get us very far here, which is probably an odd thing for a lawyer to say. But I really think this needs to be more of a moral discussion about the parameters of the medical profession. Then we'll move on to talk about various ideas where access won't be the driver of our conclusions. So one area is the idea that there are certain services that the profession should be expected to withhold, certain access problems that we should encourage. We don't want doctors to provide certain services. And at the other side of things, certain circumstances where we might be unwilling to accept a physician's refusal, even when access is not a problem.
And then we'll get into the really difficult question of the" last doctor in town" and what that doctor's obligations might be and some iterations of the last-doctor-in-town example, such as emergency services, referral obligations, and the duties to provide full, informed consent.
So to make sure we're all on the same page, my research and thinking on this topic has really focused on physicians, not on pharmacists or nurses or other members of the healthcare team. And the reason for that was I was sort of intrigued when I first started thinking about this issue by the idea that physicians have been granted traditionally the most autonomy of any member of the healthcare team.
And beyond that, I have seen some interesting examples of compromises in the pharmacy setting or in the hospital setting where people have pointed to a higher-level institution that's capable of sort of balancing patient access concerns and professional ability to refuse.
I didn't really see an easy institutional solution for physicians who are able to hang up their own shingle and don't necessarily need to be anyone's employee. So that's why I started with physicians. And I also want to make clear that I am by no means a moral philosopher. I understand that you had a discussion of the philosophy behind conscience back in September. For my purposes, I want to stress the value of having moral diversity in medicine writ large. I don't think we really need to focus on the level to which a person's refusal gets to deep levels of their personal integrity.
For our purposes here I think it's valuable to protect all types of normative judgment about the proper ends of medicine. So even though I'm using conscience or conscientious refusal, it's sort of a shorthand for just normative moral judgments about the proper ends of medicine.
And the underlying theme I want to stress for my entire presentation is sort of the John Stuart Mill model of encouraging discussion and debate in an area where we don't know what the right answer is. So to put it as frankly as I can, we don't know, empirically speaking, whether abortion is right or wrong. So I worry about pushing moral refusers out of the profession entirely. I think it's important to encourage this moral diversity in areas where we're really unsure what the right answer is.
So as I mentioned, I will talk about the legal rights arguments that I'm sure you're all aware of. You've heard patients say, "I have a legal right to this service, and I've been denied my right." And you've heard physicians say, "I have a legal right to exercise my religious beliefs, even in a professional setting." And I don't think either one of those arguments quite gets things right.
From the patient's perspective, one of the major criticisms of the American healthcare system is that we really don't have a right to much. And what we do have a right to is frequently a negative right against government interference, as opposed to a positive entitlement to certain services.
Again, abortion is a perfect example. I have a right against undue government interference in my ability to obtain an abortion, not necessarily a right to walk up to any physician and say, "You must provide this service."
Beyond that sort of Constitutional legal argument, I think it's important to recognize that the profession has been granted a lot of autonomy in terms of the doctor/patient relationship. Doctors are free to accept certain patients or not accept certain patients, and that sort of gives them protection of conscience completely separate from conscience clauses.
They can refuse to take on a patient for almost any reason other than discriminatory reasons or things along those lines. So the point being, I don't think that there's a legal argument to what patients might be claiming for services from any particular individual. They might have claims against the government or claims against the profession as a whole, but it's not a one-to-one right.
From the doctor's perspective, they actually do have a legal right as things stand now. With all of these conscience clauses that are currently on the books, they can point to those and say, "I have a legally protected right to refuse." But what I want to point out is that I think there's a strong argument that conscience clauses as they exist today are within the discretion of state and federal legislatures.
I think we can get at this best by using an example. Say State X recognizes that its citizens are having difficulty accessing some medical service that the state thinks is integral to their well-being. The state licensing board might impose a requirement that all physicians seeking licensure in the state be willing and competent to provide that particular service.
Now, to be clear, that's exactly what state licensing boards cannot do under conscience clauses as they currently exist. But that type of licensure obligation could reasonably be described as a neutral law of general applicability. And this is the standard that the Supreme Court has set forth in First Amendment jurisprudence as the test of whether a particular legal restriction is a violation of free exercise rights.
So that licensure law would be neutral because it's not intended to burden religious beliefs. It might have that incidental effect, but its true intention is to preserve patient access, and it's a law that's generally applicable. It doesn't apply only to moral refusers but, in fact, to all physicians seeking licensure in the state.
So from a Constitutional perspective I just want to point out I don't think existing conscience clauses are mandatory. And so I worry about physicians just pointing to these laws and saying, "I have a right." We should talk about what should be as opposed to what currently is, and that's why I don't think the legal arguments get us very far. We need to start talking about moral responsibilities and the moral rights that patients can claim based on those things.
So first I had a chance to speak to some of the Council staff last month, and the topic came up, "Well, what about a person who sort of objects to basic principles of Western medicine? They're unwilling to perform surgery or they think that pharmaceutical intervention is wrong."
I recognize that people hold those views. I want to move quickly away from that because I don't necessarily think those are the people that we're calling doctors. I want to talk about people we would all agree fit the description of doctors and what their moral obligation should be as members of the profession.
Generally speaking, the defining characteristic of profession is that they have an obligation to place the interests of society above their own in many contexts, this idea that they have a special knowledge base and special privileges which result in special obligations. But that primacy principle is not absolute. We let doctors choose where in the country they want to practice. We let them choose whether to accept new patients. We let them choose the hours that they want to practice. And we let them choose their specialties, limited only by the number of available residency positions.
So there are self-interested decisions in medicine that we accept. And the question is whether the exercise of moral objection is one of those self-interested decisions that we should be willing to accept as not a violation of professional duty.
I think there are a bunch of models that you've already been introduced to that will help us think about the role of the physician. From a purely descriptive standpoint, I think it's interesting to use a model that's been applied in the context of infectious disease to ask whether physicians have an obligation to undertake certain physical risk.
And so this was applied back in the '80s when there was a debate about whether physicians had an obligation to treat HIV patients. And the way this model would look at things, say were they willing to accept this level of risk of infection before, and, if so, they should be willing to accept this same level of physical risk even though it's a different disease. So if they were willing to treat hepatitis patients before, they should be willing to treat HIV patients now.
I bring up this example not to say that, well, if physicians are willing to accept certain physical risks they must thereby be willing to accept certain moral risks. This is not to say that moral risks are somehow less than physical risks.
Instead, the idea here would be — when physicians entered the profession, were they expected to undertake moral risk? And I think as a purely descriptive matter the answer to that question is no, given the existence of these laws that have been on the books for several decades.
But the problem with this model is that it's purely descriptive. It doesn't tell us how things should be. In terms of normative models of the profession, certainly you've all heard the ends of the spectrum, people who say that the physician's views should win out no matter what and people who say the patient's access interests should win out no matter what.
And, again, I think the ends of the spectrum often get things wrong, and this is no exception. From the physician's perspective, the idea is that both doctor and patient are morally autonomous individuals and physicians don't lose that autonomy when they enter the profession.
And I think normally we accept and encourage boycotts of things that we find objectionable. We think it's appropriate to try to convince others not to do things that we think are wrong. The problem with those types of boycotts in closed profession is that they can end up having an undue influence, sort of an undemocratic imposition of views on other individuals.
From the patient's perspective, you have some people who say, "Why are we even talking about conflicts of conscience in healthcare? If you're unwilling to perform a service the patient requests, just find something else to do." If you're afraid of heights, don't be a pilot. If you're unwilling to do this service, don't be a doctor.
I think that's far too simplistic of a solution for the reasons I was mentioning earlier about the value of having moral diversity in medicine, not having a purely homogenous group of physicians without anybody who's unwilling to step up and say, "No, I don't think this is the proper ends of medicine. I don't think that what you're asking for is appropriate."
Beyond that, I think we would be doing a disservice to society to exclude doctors who might be excellent physicians who are just unwilling to do one thing. I might be a great OB-GYN who's just unwilling to perform abortion services.
And so I'd encourage us to think about this issue as just one of subspecialization. I think it's a really simple, elegant way of characterizing the moral refuser. Maybe the whole specialty is responsible for X, Y, and Z services, but some specialists are only responsible for X and Y.
And, you know, we have models like this already in the profession. We have surgeons, and then we have orthopedic surgeons, and then we have some surgeons who focus on knee surgery or some particular patient population.
I don't think that there's any reason to conceptualize moral refusers any differently from that, and it allows individuals who have sort of lost the larger debate about what should be legal to create their own moral subcommunity, to find patients who agree with those views, who are willing to accept a more restricted scope of professional services.
The problem with this is that we could end up with a situation where all physicians are choosing the same subspecialties and there are big gaps of professional services that patients remain without access to.
And so for that reason I think we need to move away from talking about the responsibilities of individual physicians and start to talk about obligations of the profession as a whole. And this idea has been articulated by a number of commentators on the issue of conflict of conscience, the idea being that you can bifurcate the responsibilities of individual refusers from the profession as a whole.
As long as the patient can access the service from some willing physician, individual physicians don't necessarily have to do everything that they're asked. And I think it's important to focus on the idea that the profession can avoid conflict by trying to avoid situations where refusers stand in the place of the profession as a whole, avoid scenarios where the profession's obligations sort of trickle down to the individual physicians. And that's why I think the institutional solutions are a best bet.
I want to stress that this is the profession's obligation and not necessarily the obligation of employer. This is one of the main criticisms of the recent HHS proposed rule to set up more definitions of existing conscience clause protection.
The problem here is that we're sort of left without a higher level institution, and we can easily point to employers and say, "Okay, we think it's important to have refusers in the profession. So, employers, you can't fire them."
Because the employers don't have professional obligations and they, in fact, have businesses to run, I think it's asking too much of them to subsidize the beliefs of moral refusers. What we need to do is preserve room in the profession, but we don't need to create sort of an artificial market. I think Title 7 has really come up with an appropriate balance between business interests of employers and reasonable accommodations of the religious and moral beliefs of employees.
If not the employer, then, who will bear the profession's obligation? It's not good enough to say the profession has a responsibility to preserve access and not point to some specific body that can take actions to calibrate supply and demand in the medical field.
And so I'm not going to get into this too much, but my proposal is that state licensing boards really step things up and sort of recalibrate and reorganize state licensing boards to bear the responsibility of making sure that patients can access services that are important to them while also allowing physicians to exercise their moral belief and enter these subspecialties.
I think licensing boards really can stand in as the profession as a whole because they're responsible for creating the medical monopoly. We can talk about this more during the question-and-answer period if you're interested, but I worry it's a bit too specific for our purposes here.
So I'd like to move on to talk about what I mentioned before. Maybe there are some areas where access problems are exactly what we want. And what I mean by that is maybe there are some things that we have put in the professional monopoly precisely because we don't think patients should be doing them. And this is the idea that there's a distinction between services that are legal and services that are ethical, and maybe there's been a delegation of responsibility to not provide unethical services placed on the medical profession.
With that being said, I think it's crucial to recognize that there's nothing necessarily — no offense to anyone here — about being a physician that endows you with some level of ethical expertise. You might have more familiarity with ethical dilemmas. You might have thought about them harder. But there's no necessary reason that a doctor would come to a particular conclusion about a moral dilemma that we should accept as more valid than any other member of society.
So if we're going to allow the medical profession to restrict the services that it has an obligation to provide — certainly they don't have an obligation to provide illegal services. And we can also say they don't have an obligation to provide services that are, as a matter of their expertise, not going to forward the patient's aim.
I think the best way to get at this is an example. If I go to my doctor and say, "I want Vitamin C injections for my cancer," the doctor has the expertise to know that's not the appropriate course of treatment for treating the patient's problem. Those scientific and medical expertise issues can also be appropriately carved out of the profession's obligation.
But beyond that, there might be other things to carve out. We just can't leave it to the profession to decide on its own what those things should be. I think this would have to be a broad social debate about things that are appropriately excluded from the basket of services provided by the profession.
I also want to touch on these issues of validity and sincerity of the refuser's grounds for refusal. And here the idea is even when access concerns can be avoided there may be some grounds for refusal that we're still unwilling to accept. Even if I refuse and the patient could easily go to Dr. Pellegrino sitting right next to me, there might be some reasons that we don't want to protect from my refusal.
I think certainly we can't reject refusals on the grounds that they are right or wrong, true or false, because, again, we just don't know. But I do think we can draw a line between objections to a service and objections to a patient.
And a perfect example of this is the case in California that was decided this summer of a woman who sought reproductive assistance and was told that her physicians would not help her with her fertility treatments either because she was unmarried or because she was a lesbian. The reason for their refusal is sort of up in the air. It's still being litigated.
I don't think which of those two it ends up being actually matters because I think both involve a dignitary harm of having your person judged as opposed to your choices judged. So I think it's appropriate to protect refusals that are consistent across the board: I won't provide in vitro services to anyone versus I won't provide in vitro services to you because you're a lesbian or you because you're African-American.
Those types of bigoted refusals are not appropriate within the profession, and resolving them by saying, "Well, the patient can get access elsewhere" really sets up a sort of separate-but-equal scenario that is just unacceptable, should never have been acceptable, and I don't think we want to protect that type of refusal.
So now the meat of what I'd like to talk to you all about today, and this is what I think will be most controversial, and I'm really interested to hear what you have to say. But the idea that there may be some scenarios where we truly can't separate the individual physician from the profession, a situation where the profession's obligations have now trickled down to the individual doctor because that doctor is the only one who's available to provide the service that the patient seeks.
Now, here, because the individual is standing in the shoes of the profession as a whole, I think we can legitimately say they have a responsibility as a professional to provide access to the service. We're not dealing with sort of moral equals where they only have an obligation not to interfere with one another. This is a hard case because somebody's views are being imposed on somebody else, no matter which way we decide. Either the physician's views are being imposed on the patient because they won't get the service or the patient's views are being imposed on the physician because the physician will have to do it.
In that scenario, because the physician has voluntarily entered this role, I think it's appropriate to say that the physician must do it as a matter of professional ethics. But that being said, I don't think that we can necessarily legally impose that obligation. The problem with enforcement is that it would set up huge disincentives.
First, you can only have a responsibility to do things that you're competent to do. And so we might have a situation where physicians are being expected to gain competence to prepare for this last-doctor-in-town situation. If we force them to undergo training in the things that they find morally objectionable, they just won't enter the profession, and we won't have a compromise at all. We'll lose that moral diversity. We'll lose that counsell of restraint because they just won't enter the field.
Even if we only impose the obligation in the hard cases on physicians who already have the competence — maybe it's something that's not a technical service. Maybe it's termination of lifesaving care where it's not a matter of knowing how to do it; it's just a matter of being willing to do it. If we enforce the obligation in those cases, the refuser will just quit. They're not going to do it. I mean, that's sort of the idea behind the moral refusal.
So the individual patient who's seeking the objectionable service will be no better off because they're still not getting it, and we might create a situation where other patients who are seeking morally neutral services are also worse off by virtue of the refuser quitting.
If it's truly the last OB-GYN in town and that's why they have this obligation, if they quit, everybody in that town is now left without important medical services. So I really worry about these disincentive effects, and that leads me to believe that it will be inappropriate to legally enforce this obligation that I do think exists.
Now, in my scenario with the licensing board I've come up with sort of a complicated way of sort of compensating patients when they are denied services in this last-doctor-in-town situation. It's not a perfect solution.
It's sort of payments of a fine, the idea being that the licensing board would have violated its obligation as a representative of the profession to preserve access. And certainly, you know, a monetary compensation is not as good as getting a service, but when you think about what legal enforcement would entail, it really would just be a monetary fine on the physician.
We're not in the business of physically taking the physician's hand and making them do the service. So really the patient is sort of stuck in those scenarios. It's a matter of who pays the fine. So one of the more difficult iterations of the last-doctor-in-town scenario is the obligation to provide emergency services. This is beyond just imposing the doctor's views on the patient or the patient's views on the doctor. Here we have a situation where if the patient doesn't get the service, the doctor's views have sort of been imposed irreversibly and forever. That's why we'd be calling it an emergency.
Unfortunately, I don't have the solution. I can't snap my fingers and say what we should do in an emergency situation. What I can do is say we need to think hard about how we should define emergencies. I think these are the types of things that would impose an avoidable, serious, irreversible consequence on the patient, either right now or in the near future. But I do worry that those same disincentives that I mentioned before are still present in the emergency scenario. It's just that the consequences for the patient are so much greater that maybe we can really say, "These are the type of professional obligations that we should be legally enforcing."
Now, there's a caveat to that, which is, again, you can only have an obligation to do what you're competent to do, and so I don't necessarily think we should be expecting all physicians to gain training in morally objectionable services just to prepare for these emergency scenarios. In fact, we don't expect that of nonrefusing physicians.
You don't have to become an expert in everything just to prepare for the situations that may arise. And that may, in fact, help get us closer to a solution on the emergency side of things because refusers could sort of avoid the competence to provide the objectionable service. Of course, that doesn't get the patient in any better of a situation.
So I would like to focus our discussion on what to do in the emergency context and also what to do about the obligation to provide referrals to other willing providers if you yourself are unwilling to provide the service.
Now, in the emergency context, we might be willing to impose and enforce an obligation on the physician simply because the patient can't protect him or herself. In a referral context, maybe there are things we could do to help the patient protect themselves so that the physician still can have protection of his or her moral beliefs.
And here the institutional things might come in again. Are there other places where we can make information available to patients where they could find other willing providers? Because it's not just a matter of sophisticated individuals being able to navigate the Internet and their insurers and figure out where else to go.
Maybe we can make that information more easily accessible to patients who have been denied services so that they don't have to rely on their physicians. With that being said, if the patient really can't find anybody else — this is another variant on the hard case.
The doctor, by not telling the patient where else to go, has sort of created a situation where he or she is the last doctor in town. I think in terms of levels of moral complicity, certainly it's better to tell the patient who else might be willing to provide the service as opposed to actually doing the service himself.
With that being said, moral complicity is a huge problem. It's a valid argument, I believe, to say it's quite bad — maybe not as bad to tell you who will perform the morally objectionable service. So, again, I think we're sort of stuck in not an intractable situation. I think there can be solutions from the institutional level down. But I'm not quite sure what we should do until we get those institutional solutions in place.
And, finally, I think that there are some baseline obligations that are less difficult to handle, the first of which is an obligation on physicians to provide full notice of their moral beliefs and their grounds for refusal right up front, try to avoid conflict before the patient won't be able to find anybody else.
And this is the idea of encouraging doctors and patients to match based on their shared beliefs. The idea of the subspecialist requires the doctor to disclose the types of services they're willing to provide. And I think it should be pretty uncontroversial. It's not a major burden on the physician. If we can help avoid conflict at the front end, it shouldn't be too much of an imposition on the patient.
And I do want to make clear that there are some things patients should be expected to do to accommodate the moral beliefs of their physician. They should try, if possible, to find somebody else instead of demanding the service from the moral refuser.
So in addition to notice of moral beliefs, I think it's important for physicians to have a full understanding of the situation before them, have all of the scientific information that will help them decide whether their moral beliefs really prevent them from providing a service the patient is after.
And, in fact, I want to stress this. This is sort of two-way street: physicians to be encouraged to have an open mind and to really think about why the patient is seeking the service and why the patient's reasons may, in fact, convince the physician that it's acceptable to provide the service.
And, finally, the obligation of informed consent. And I know Prof. Schneider might have some questions about this obligation between the medical profession and the legal profession, but my perspective is that failure to disclose available alternatives to the patient is really an abuse of power.
The reason that society can work and be successful is that we've sort of delegated different tasks to different members of society. I don't have medical expertise; I have legal expertise, and that works because Dr. Pellegrino and I can sort of swap services. I don't need to know everything about everything because I can rely on other people.
I have to rely on my physician to tell me what options might be out there. If he doesn't tell me, I won't even know that I need to protect myself from anything. And I really think that that's a paternalistic imposition that's really an abuse of power.
I know it's controversial, that to some degree there are some people who say in terms of moral complicity even providing an informed consent goes too far. I think this needs to be a baseline obligation on all physicians, including refusers.
So to wrap things up, I think physicians should not be expected necessarily to comply with all patient requests in all circumstances. I don't think necessarily that they should be willing to pay a price because I don't think they've always been violating a duty. If somebody else can do it, I'm not necessarily violating my duty.
The profession as a whole has a collective obligation to preserve patient access, and sometimes that professional obligation can trickle down to individual physicians. I think it's crucial to protect room for conscience in the profession.
We shouldn't force refusers out, but we don't need to necessarily subsidize their views. But we need to find a solution that can balance patient interests and physician interests, not legal rights, to the extent we can.
So that's my presentation, and I'm really interested to hear what you all have to say and think about this topic.
CHAIRMAN PELLEGRINO: Thank you very much. I've asked Prof. Schneider to open the discussion. Carl ?
PROF. SCHNEIDER: I have a couple of questions to get us started. The first one is an empirical question. I have no idea how common these kinds of conflicts are and how difficult it has been to resolve them. I have no idea how often people come to doctors and doctors say, "I have qualms of conscience, and I can't help you."
And I don't know whether they are the kinds of situations where it is difficult to refer a patient to someone else. I just have no sense at all of whether this is an interesting hypothetical problem or a widespread social problem. And I'm particularly curious about that because bioethics has specialized in intensive investigation of questions which affect almost no one.
The second question I have is essentially how does the law's treatment of lawyers' conscience objections to providing services differ from the ethical/legal treatment of doctors who have conscientious objections to services? And let me, for the benefit of people who haven't ever had to take a course in legal ethics, give a quick sense of why I think this is kind of an interesting question.
Doctors and lawyers are the two — medicine and law are the two classic professions. The classic sociological definition of a profession includes professional autonomy, both in the sense that the profession regulates itself and that individual members of the profession make decisions about their own work and about their own behavior and to a very large extent about their own ethical behavior.
Nevertheless, the way that legal ethics and medical ethics have developed has been, I think, maybe even radically different. And to put it in an enormously crude generalization, lawyers have believed that the standard sociological description of professional autonomy, individual and group, is a good thing and have gone a long way toward preserving that kind of autonomy.
With doctors, that has been much less true. I think one of the easy examples of this is in the law of informed consent. The legal duty of informed consent for doctors is very well developed, and there is a lot of specific legal writing, both in cases and in statutes, that lays out what kinds of duties of informed consent doctors have had, and there are suits — not as many as doctors think there are, but there are suits which patients try to vindicate their right to informed consent.
Perhaps the most distinguished exponent of legal ethics in the last generation is a man named Geoffrey Hazard, and this is what he says about the idea of informed consent for lawyers and clients: The idea that lawyers and clients should share legal decisions is difficult to reconcile with several considerations. In other words, shared decision-making is difficult to reconcile with several considerations.
First, the lawyer usually knows more about the legal aspects of the problem than the client and more than the client practically can be told. Second, the lawyer typically is inured to the emotional distressive conflict and can therefore deal with it more steadily.
Third, the decisions in carrying out a legal matter often require unabashed assertiveness. Lawyers are used to taking such measures while ordinary people are not. Also, some clients expect the lawyer to take responsibility for a difficult choice: "What should I do?"
Well, one takes oneself back fifty years to the standard medical explanations of why informed consent would be a bad thing, and word for word, comma for comma, that is exactly the explanation you would have gotten. It's been completely rejected in the medical context.
It is still perfectly respectable in the legal context to the extent that there are some kinds of questions that legal ethicists talk about as being purely reserved for lawyers to handle. Questions about how you're going to handle some of the more technical parts of litigation, even if they have consequences for clients, are regarded as being within the lawyer's discretion.
More broadly, I think that here has not developed in law the kind of external ethical regulation that you see in medicine. In other words, there is no legal equivalent of bioethics, of a profession and an enterprise whose job it is to tell doctors how they ought to behave. There is no Belmont Report for lawyers. There is no attempt to wrap up all of the principles of legal ethics in beneficence, autonomy, justice, and for those who prefer, nonmaleficence.
There is, rather, a practice of leaving these kinds of ethical questions to the work of the legal profession to evolve. You know, I think part of the reason for this is that lawyers make the rules for lawyers, and lawyers make the rules for doctors, and there is something — it is a lot easier to see the virtues of regulating yourself than to see the virtues of having other people regulate themselves.
But I also think that when you read the ethical literature in law and compare it with the bioethical literature, you get a much more serious ethical discussion in the professional legal literature than you do in bioethical literature. And I think the same thing is true in a related area, which is the regulation of research ethics.
If you read the Belmont Report or if you read the literature on research ethics, and particularly if you encounter the education on research ethics that is given researchers by IRBs, you would see what Prof. Elshtain yesterday described as an extraordinarily thin ethics.
If you read the writing of, for example, social scientists on the ethical problems of doing ethnographic research, you see people who are actually involved in the work itself, who know what the real ethical problems are, who are extraordinarily sensitive to those ethical problems, and who write about them in a way in which difficulties are appreciated.
So it's not at all clear to me that the traditional model which the lawyers follow is the wrong one, but the difference between legal ethics and medical ethics... I think is quite significant.
So my specific question here is not to all of these generalities I have been enjoying but to ask whether there is some kind of parallel to this problem in legal ethics and, if so, how it is resolved and whether that resolution tells us anything about the problem in the medical situation.
Sorry, I forgot to say something. I enjoyed reading your book and plan to steal from it in the writing of my case book, with your permission.
MS. LYNCH: Of course. Well, to answer your very first question about the empirical nature of this question, it's actually something that I struggled with when deciding to write a book, and I should say I started to write an article, and it sort of took on a life of its own and turned into a book.
And I struggled with it because I think there are so many really important questions in bioethics, and certainly I know the Council struggles with this. How do you decide to talk about this question as opposed to setting every single session trying to figure out how to deal with health insurance, lack of access in this country?
I mean, there are questions that affect a ton of people, and there are questions that affect a handful, relatively speaking, but that have really big consequences for those people that they affect. And so I don't know that it necessarily matters whether this is a problem that's, you know, happening every single day to lots and lots of people.
I think the question is how bad are the consequences for the people to which is does happen. But there was an article in The New England Journal back in 2007 that tried to get at some of these empirical questions.
And I know that it suggested that as many as forty million Americans may be cared for by physicians who are undecided or believe that they have no obligation to disclose information about medically available treatments that they consider personally objectionable and as many as 100 million Americans, one in three, may be cared for by physicians who are undecided or believe they have no obligation to provide patients with referrals.
There was a less scientific survey in Self magazine that found that nearly one in twenty respondents had reported that their doctors refused to treat them on some occasion for moral, ethical, or religious reasons. So it's a pretty significant number. I don't want to endorse this Self magazine study. Otherwise there could be a ton of self-selection and other types of biases there.
But from an empirical perspective it does seem like this is a real issue. You know, we see news reports in the pharmacy context of this happening quite frequently. The Benitez case in California, the lesbian insemination case I was talking about earlier, got a lot of press. So it's certainly an area that people are concerned about and interested in.
In terms of the legal parallels, I think it's interesting to note that lawyers are permitted to recuse themselves when they believe they can't be a zealous advocate for their client. And I've heard people say the same thing about physicians.
I've heard people say, you know, "Look, do I really want the physician who doesn't want to be doing this to perform my abortion? Thanks, but no thanks. I really want somebody I can trust and who's going to give me good medical services."
And the client says the same thing: "If the lawyer fundamentally disagrees with my goal, I don't want that lawyer." There are similar types of emergency scenarios in the legal context where we have laws that require minors seeking abortion to get court approval before they can do that.
And we've seen situations where the court has had some difficulty getting somebody to represent that minor. Different courts have dealt with this in different ways. There have been cases where courts have censured lawyers for refusing.
Again, I think the professional obligation — we can sort of take this a step higher and make sure that the legal profession is providing access to its services, just the same way we can expect the medical profession to make sure it's providing access to its services.
In terms of informed consent in the legal context versus the medical context, I don't know that I quite see things the same way as maybe Prof. Hazard or, from what I understand, how you were describing things in the sense that the lawyer's obligation is to advance the client's interests and the lawyer may make decisions based on the lawyer's expertise about how to best advance the patient's interests.
They might engage in discussions trying to convince the client of what his or her interests should be based on that legal experience. But I don't think as a legal community we would sort of pat the lawyer on the back who says to the client, "I'm not going to do X, Y, and Z things because I disagree with your end. We're going to do things my way."
There's a difference between professional expertise and decisions made on that basis and pure disregard for the client's goal. And I think that's the exact problem we're dealing with in the medical context with regard to informed consent, making sure that patients know what services they may have an option to seek out from some willing provider.
I think it's crucial we put the obligation on the profession to bear the expertise but to not go beyond things that are part of their expertise, if that makes sense. I'm not quite sure that gets at your question.
PROF. SCHNEIDER: My question was just about whether there were parallels or not. I guess one thing that strikes me is that — is two things. One is a lot of the codes of ethics specifically say to lawyers, "Part of the advice that you give may be based" — and almost implying should be based — "on your ethical view of the situation."
You don't just sit there and tell the client what the legal possibilities are. You say to the client, "You are legally entitled to do this, but I believe that would be a wrong thing to do, and let me tell you why."
Now, in real life it's hard to give some kinds of clients some kinds of advice when you want their business. And the way that it usually works out is that the lawyer finds a way of telling the client that it is in the client's own best interest to do the ethical thing and not just to do the ethical thing because it's ethical.
The other thing that strikes me is that the law has a problem that I think you were referring to, which is that you have to provide representation for all kinds of truly loathsome people, and you have to provide representation for people who may not be loathsome but whose views are not much appreciated in the community. And so a problem for legal ethics has been how to tell people, how to tell lawyers that they should provide their services to these obnoxious or eccentric people, even though the lawyer finds them personally reprehensible.
MS. LYNCH: Right. So in terms of the counseling role of the lawyer, I think there's a good argument that physicians can engage in similar counseling as long as it doesn't move to a level of condemnation or proselytizing about their beliefs.
I think it's acceptable for the physician to say, "I will not perform an abortion because I believe it's wrong for X, Y, and Z reasons." I don't think that the patient is necessarily harmed by hearing those reasons. The patient's interest is gaining access, and the profession can make sure that that access is granted.
So I think the lawyer acceptably engaged in that counseling. The physician may also engage in that counseling. The question is whose ends win out, and I think the patient's ends need to be the physician's goal.
If the physician can't do it, we have to make sure somebody can within that body of professional obligations that we were talking about before that's appropriately limited to not only things that are legal but also things that we think are ethically appropriate as a society together.
The lawyer, I think, has the same obligation to advance the client's end. And if that can't be done by this particular attorney, the profession needs to make sure somebody is available to provide services to meet those ends.
CHAIRMAN PELLEGRINO: Thank you, Carl. My first commentator is Prof. Gómez-Lobo.
PROF. G Ó MEZ-LOBO: Thank you. I greatly enjoyed your exposition and the material that I've read. In fact, I would like to praise you for your idea or your project of finding a compromise because, of course, there are much more radical positions out there.
It is my understanding that, for instance, in Switzerland there was a movement to require the people in the health profession, physicians and nurses, to be trained in abortion, for instance, even against their conscience. And sometimes I sense that there may be a movement going in that direction. So I think your position is praiseworthy.
However, I have problems with some of the basic conceptualization of the whole discussion, and if you'll allow me to perhaps make a few suggestions it would help the exchange of ideas. First of all, I'm not sure I fully agree with some of your characterizations of conscience. First of all, I think that conscience is private but not subjective in the following sense that, for instance, my tastes or my toothache are subjective.
But conscience is a judgment which may be true or false. And when we make claims that may be true or false, we're risking, so to speak, a claim about the world. And that should be borne in mind. Judgments of conscience of the physician are about the real world.
And here comes the next problem. There was talk, for instance, about physicians' obligations and sacrifices or about both sides having to sacrifice something to reach this commendable middle ground. And I'm not sure it's really like that.
The reason is this: I think that a serious refusal of conscience of the physician would not be justified by saying, "Oh, I want to keep my integrity." That would be senseless. Integrity is a moral virtue which follows upon following one's conscience.
But the content of the judgment of conscience of the contentious physician has to be about the patient, not about himself. In other words, when a physician refuses to perform an abortion, the judgment made there is that it would be morally wrong to kill the baby. So it's about the baby, not about himself. That's the first thing.
So I don't think it can be put in terms of a conflict between physicians and patients. In both cases what is at stake is the patient. Now, what we have here is the conflict between an action which the physician deems to be morally wrong and an action which the patient probably deems to be morally right.
However, the action itself, it seems to me, is not part of the medical goals. I hope I'm corrected by my medical colleagues here, but if the goals of medicine imply preventing illness, curing illness, confronting the patient, et cetera, the first question that one should ask is is a pregnancy an illness or not, is an abortion therapy or not.
And that's where language gets blurry because there's a lot of talk about service. And service — or desired services seem to cover a lot of things that go beyond, at least as I understand, the goals of medicine. That's why I wonder, for instance, whether in internal medicine you find many patients expressing strong desires from which the physician would have recused himself. I would think that someone with hepatitis and coming in with a strong desire to have something done to her — how the physician would react to that.
Now, the final point I want to make is this, which is the reason why the notion of compromise is extremely difficult to find in these areas. I think that there may be forms of compromise in the law, but in moral philosophy the problem is this: It's that the only thing we go by when we act is our moral judgment of a situation, the judgment of conscience.
We don't have another source. There is no other way. It's our judgment on the situation. So every time someone, a physician or another individual, is asked to act against their conscience, that is going to be a morally wrong act. And the question is — can we go there? Is it reasonable to have a legal norm or bind physicians or any other kind of person to do exactly what they deem they should not be doing. Now, I'm thinking about serious cases. I agree with you that there are maybe frivolous cases or cases that should not be considered at all. I don't think that there's a valid moral judgment on not treating someone because of his or her race, for instance.
But there is a valid judgment if the physician considers that it's the good of the person that is at stake. In other words, if the act is going to be an act of maleficence, a violation of known maleficence, then I don't see how anyone could be required to go that route. So I realize that probably is what you call the emergency situations, that is probably more delicate of that. Happily, what you propose as a legal code seems to leave the physicians clear of that. So those would be my comments. Thank you.
MS. LYNCH: The first point you made about conscience being private but not subjective and a judgment that may be true or false I think is right in the sense that yes, it's true or false, but no, we don't know whether it's true or false. I can't say to you your belief is wrong, right?
PROF. G Ó MEZ-LOBO: You can perfectly well if you give me a good argument.
MS. LYNCH: So there are some things that maybe we could come to an agreement on, but there are some things — abortion is a perfect example — where we can't empirically decide when does this thing become a baby, a human.
PROF. G Ó MEZ-LOBO: I think we can.
MS. LYNCH: I respectfully disagree, I guess, about whether I can tell somebody else who also has good arguments for why they believe what they do that their arguments are wrong, my judgment of the case is right, and they should agree with my judgment. I can try to convince them.
PROF. G Ó MEZ-LOBO: Yeah, we should argue the matter. I mean, we could do it right away.
MS. LYNCH: No, I agree we should argue, but we may get to a point in our argument where we just have gotten as far as we can go and neither one of us can claim victory as having found the moral truth. I mean, that's why these questions are so difficult. That's exactly why they're so difficult.
In terms of the idea about — I think you mentioned about pregnancy being an illness or what services are sort of beyond the ends of medicine or the goals of medicine, I think that there are judgments about physicians have an obligation to provide services that patients need as part of their healthcare, and there are questions about what those needs are versus desires.
I think we need to take a step back, though, and look at what has the profession been given a monopoly over. They've been given a monopoly over things that may be just desires as opposed to needs, things that may be treatments of conditions rather than illnesses.
Pregnancy is a condition, not necessarily something that's wrong with a body. So as a fact that the profession has a broader monopoly, I think we can use that to say they have an access obligation beyond just treatment of disease.
And I think your point about the physician when they refuse is about the patient not necessarily about the doctor — I agree it's about the patient, but I do think it's about the doctor. It's a judgment that I can't harm the patient, like that the patient is asking me to do something that I think is harmful to them, and that's why I think it's wrong. That's about the patient.
But it's also about me because I couldn't sleep at night if I did it. I would be going against the tenets of my religious belief if I did it. I would have some sort of retribution from a higher power if I did it. I think these are things that — why people are saying it's about me and it's about protecting the patient.
DR. ROWLEY: I'd like, if I could, just sort of, with your permission, Bill — this exchange, it seems to me, has highlighted the difference in the way members of the Council have come to various judgments from our very first meeting.
And Alfonso has laid out in ways that are for him logical based on firmly held beliefs that he is absolutely correct in what he says such that there isn't really room for discussion, and therefore we're at the same impasse that we've been at from the very beginning, it seems to me, and I'm not able to go back and pinpoint the items, though I think that there were probably several early on, in the way he framed the issues that made it absolutely clear in this example that the physician has the right and the obligation to be absolutely firm and rigid and that compromise is not possible in that situation.
I think for me it was a clear example where I don't agree with the conclusion, though as he outlined it, you can say he got there logically. But I think it's emblematic of what we've been through for quite a number of years.
CHAIRMAN PELLEGRINO: I think I'll go down the list of people who want to comment, and then maybe hold your comment till the end. I have Hurlbut, George, McHugh, Meilaender. Janet, you've already had a chance, but you can if you wish. So Bill Hurlbut ?
DR. HURLBUT: So first I want to commend you for your focus on this issue and being ahead of the curve enough to write a book on this when it's just coming into great prominence, not just with promulgation of new guidelines for regulations by the Secretary of HHS, but shows a very evident dilemma about to come into collision with what appears to be imminent, the realization of the relaxation of the principles on which federal funding will be applied to stem cell research.
I think we're going to see the expansion of this out of the realm of abortion into a much wider arena that relates to research and clinical practice so that whereas now there may be relatively few cases of people objecting to participating in certain things, I think you may see a very large number of people.
It's going to cause a lot of turmoil in our research centers and our hospitals. And, actually, it's already much bigger than people realize. If you take your principles where provision of access is very important, you ask how common it is.
Well, if you broaden this out and say, well, it's not just the things that have been typically considered the controversies, but you broaden it out to consider that a doctor or at least the medical profession as a whole should have an obligation to provide a balanced access to information and maybe even referral to services that meet the range of a reasonable minority of patient intentions and desires, then one would have to consider including issues like natural family planning and snowflake babies.
And I doubt that people that go into the IBF clinics are ever really or at least not regularly told about adoptable embryos, for example, and certainly not about natural family planning techniques, which actually have a very good medical basis to them.
So it's a broad problem, really, when framed in your terms. However, I would like to challenge your terms slightly, while seeing good in it. And there's a couple of statements you made — and I want to be brief because I know there are a lot of good comments to be made by others.
But first you said access must be the driver. And I find that a little bit of a trouble assertion because I think at least one step deeper. Access should be aligned more fundamentally around principles consistent with a coherent view of the proper role of medicine, because I don't think we need to — just because we're a pluralistic society it doesn't mean we have to offer views of everything.
And just because somebody can disagree, I still think we need a coherent view of what medicine is. And notwithstanding the elements of truth in what Janet just said, I think there are some things that you could argue about that are still pretty inconsistent with medicine, and I would refer to those things, for example, as yesterday we were talking about the patients who want their limbs amputated.
One could say, well, that's just their point of view. And yet to quote Art Caplan — I don't always agree with Art Caplan, but he says — contrary to the spirit of what you said, he says, "It's absolutely utter lunacy to go along with a request to maim somebody."
Now, I don't mind that kind of absolutism, and the reason I don't is because it seems inconsistent with the fundamental principles of medicine to go around cutting people's legs off. So, then, what is going to guide us and how are we going to keep from having just a total sort of full spectrum of opinions and personal beliefs? Medicine has to be oriented around something that is coherent, something that is consistent, a vision that has an integrated sense of purpose.
This is a really important thing as the basic paradigm of medicine shifts off of its traditional purposes, which were to cure disease and alleviate suffering, as we discussed yesterday, to a new paradigm of liberation which escapes all bounds of natural coherence and puts whatever the patient wants into the hands and even obligations of the medical profession. But the problem with such a vision is it's deracinated from any concept of natural reality and natural relationships and what I consider the proper ends of medicine. It's simply open to human imagination.
So my final thing I want to just raise, a slight correction in what you said. You said nothing about being a physician endows you with ethical expertise. Well, I certainly agree that there's a broader community of discussion in ethical issues, and doctors and scientists should humbly acknowledge the realms of insight from philosophers, theologians, and just general people living in the world.
I mean, common people who aren't even considered educated by the rarefied notions of education in today's world, people who have been educated by the crucible of experience — mothers with handicapped children and so forth, people who really know what life is by living it, should be included in this dialogue. Nonetheless, as Dan Foster yesterday so eloquently and movingly said, the physician who's properly embedded in humility, his humility of experience, and within the tradition of his profession across time and culture, not just one little segment of this sort of flavor-of-the-month ethics which floats through any social group including doctors, but one who's embedded broadly in the roots of medicine does, I believe, have a special kind of ethical expertise in the realm of medicine.
And that is that we see things. We sift and sort them. We experience the consequences of treating them. We watch patients over the course in a way that nobody else in society does. And we're one of the few professions that actually sees people suffer and die anymore, and it informs you.
And what it did to me in my training was it informed me and clarified and, I think, channeled and confined my vision of what medicine should properly be, the proper ends of medicine. And here I want to just quote again what I did yesterday, the principles that Dr. Schneiderman left us with.
He said, "We started with a premise that physicians are obligated to offer only those treatments that have a reasonable chance of achieving a therapeutic goal." And I think the word "therapeutic" could be narrowed to certain things. And he went on to say, "We are a healing profession committed to helping and serving the sick."
And even some of the things you've mentioned today I don't think — while they maybe should be legal, don't necessarily qualify in those categories as healing and therefore are not the obligation of either the licensure board or the profession as a whole to endorse.
CHAIRMAN PELLEGRINO: Thank you, Bill. Dr. George ?
PROF. GEORGE: Dr. Pellegrino, I wonder if in view of the detail of the points that have already been put to Ms. Lynch whether she might like to answer those now, and then I'm going to lead into some other areas.
MS. LYNCH: Sure. Briefly, because I'd like to hear what other people have to say, I generally agree with the broad concepts that you've put forth. First, things like natural family planning or things that are sort of out of the ordinary realm are precisely the types of things that should be disclosed as available options.
And part of the proper ends of medicine should be the types of things that the profession should have an obligation to preserve access to. Getting to the point about access being the driver and the proper ends of medicine, I wasn't able to get into that too much during the presentation, but it gets to that point about the profession not having an obligation to provide those services that are illegal, of course, not having an obligation to provide those services that are just scientifically or medically unsound. Those are clear restrictions on the profession's obligation.
These other areas about amputation of a limb, helping sixty-seven-year-old women conceive children, helping women conceive using sperm from their husband who has just died — these are the fuzzy areas that I think we need to decide does the profession have an obligation to provide those services.
These are the things when people view them, they go on The Today Show and get attacked for having done them. People, Art Caplan or others, write in the media about they should not have done those things.
My point was that the profession of medicine shouldn't stand up on high and say, "We're not doing X, Y, and Z." They need to engage in a debate with society as a whole, those people who have learned through experience to understand what the proper ends of medicine should be.
My point was that it just shouldn't be an insular professional ethic. Certainly the realm of professional access obligation can be narrowed from what's legal and I think should be narrowed. I just worry about delegating that task wholeheartedly to the medical profession.
CHAIRMAN PELLEGRINO: If I may, I'd like to proceed down the list of speakers so that everyone has a chance. Robert, you are next.
PROF. GEORGE: Thank you, Dr. Pellegrino, and thank you, Ms. Lynch, for your presentation. Since I'm a great believer in the Biblical statement that blessed are the peacemakers, I'm going to lapse into my usual role of trying to make peace between my colleagues.
And I want to use a little colloquy to show Dr. Gómez-Lobo and Dr. Rowley that actually they're in heated agreement, that there's no real disagreement here. And I'll do that by beginning by saying you don't really think, do you, that the absence of agreement on moral issues entails the proposition that there's no truth of the matter on those issues?
MS. LYNCH: I agree there's truth. I think we don't know what the truth is.
PROF. GEORGE: That was going to be my next question. So the fact that there is disagreement about a fundamental moral question means that we can't really know what the truth is, and we can only know what the truth was if the truth were empirically verifiable.
MS. LYNCH: Right.
PROF. GEORGE: Do you see immediately what the problem with that position is? You've just endorsed a standard of truth, determination of the truth, which is itself not empirically verifiable.
MS. LYNCH: I'm not sure that I follow.
PROF. GEORGE: You've just endorsed a standard of what has to be metaphor to be able to say that we know the truth of the matter, such as the truth of the question of whether truth can be known only if it's empirically verifiable. Right? You've just endorsed the standard. But notice that the standard can't meet the criteria you've set out for truth.
MS. LYNCH: Because it's unknowable?
PROF. GEORGE: It's not verifiable. But you do want to say that you know that we can't say, we can't know what the truth is. That's something you know. You know that we can't know what the truth is. But, of course, that's not something that's empirically verifiable. So there's a problem here. I think you're going to have to — if you're going to argue that line, you're going to have to grapple that.
MS. LYNCH: And the tension here — and perhaps it has been overstated, but I'm not sure that it has. The tension is people can make a reasonable strong argument why abortion is wrong, and people can make a reasonable strong argument why we should preserve access to abortion and that, in fact, there are some interests or consequences that are worse than the consequence of providing an abortion.
CHAIRMAN PELLEGRINO: I'd like to intervene here, which I rarely do. I think the fundamental question that Janet pointed out is one of irreconcilability at this point, and I think it's an important question, but I don't think we can —
PROF. GEORGE: Yeah. I don't want to pursue it very long, but I do want to make the point that —
CHAIRMAN PELLEGRINO: You make the point very well.
PROF. GEORGE: The belief that not only that there is truth but that we can know the truth, far from shutting down argument, gives us the incentive to engage with each other in argument in the hope that we will arrive at the truth. That doesn't mean that we will reach agreement. It doesn't mean that we will arrive at the truth. But it certainly doesn't shut down argument. In fact, if you took the opposite view, that there is no way in the end of knowing the truth, then the point of argument seems to be lost, and rhetoric turns into just a matter of manipulation. And I'll leave it at that, Dr. Pellegrino, but I do have a couple of other areas I'd like to explore with Ms. Lynch.
CHAIRMAN PELLEGRINO: We're under a timeline, and that's why I'm trying to move it along, but I think this is a crucial question. Let me add my word here. I think that this is a very serious issue, as was pointed out. I think it's one we're going to be facing.
I'm on the record as stating very clearly and without equivocation that I think [audio lost] and I think having the opportunity to just lay it out again once more in light of our discussion of conscience is what we're trying to do rather than try to settle it here. I agree with you, but I think I've been very much in favor of the exchange of ideas. Why don't you go ahead, Robby, and I want to move around the others and then get down to the rest of it.
PROF. GEORGE: Okay. I'll just do one more, then. I had two more, but let me just do one. Ms. Lynch, I want to explore with you a little bit this very interesting distinction that you introduced us to about objections by physicians based on judgments about acts and objections of physicians based on judgment about persons and this concept that you mentioned of dignitarian harm in the case of objections based on persons as opposed to acts and what you referred to at one point as bigoted motives.
Just a test, to give you a hypothetical case, let's say that there is a physician in the assisted reproduction business who is of the Orthodox Jewish faith. He believes that sexual relations should be within marriage, that marriage is a man and a woman. He believes that children should be raised in the context of that kind of family, and he has moral objections to other sorts of arrangements.
He is approached by a woman who identifies herself as being a polyamorist. She's in a multiple-party sexual arrangement, and the members of that group have decided that they want a child, that she wants to be the person to conceive the child.
He says, "Look, I can't do that. I don't believe in the kinds of relationship you would be bringing that child into, a sexual partnership of multiple parties, a polyamorous union, and therefore I'm not going to perform this service in this context for you. If you're simply coming here with your husband, I would do that. But this is a different arrangement that you're suggesting."
Is that a case of objecting to an act or a person? If it's to a person, would we want to say that he's a bigot or that anything about his views is bigoted? Where does that fall? On which side of the line?
MS. LYNCH: So I agree that perhaps the use of the word "bigoted" was potentially going too far, but this example that you've laid out I believe is identical to this case of the lesbian woman whose physician disagreed with her lifestyle choices, felt that the child would not be in an appropriate familial situation, and therefore objected to the patient instead of objected to the service.
Now, I understand that those views might be legitimately held, and, in fact, in the reproductive context, we are in a serious quandary of having people being able to tell other people, "You should not be able to have a child" or "I won't help you have a child because I don't think you'd be an appropriate parental figure."
I think we must draw the line somewhere between objections that are appropriate and objections that we think go too far, and we need to draw a line that would allow us to reject refusals based on racist beliefs or other judgments of the patient. And I think your example is precisely the sort that even though it's a genuine moral belief, that's not the type of moral belief we can protect in this realm.
PROF. GEORGE: So his belief against polyamory is like a racist belief in the relevant respect?
Ms. Lynch: You've put it in stark terms, but I think the consequence is the same.
PROF. GEORGE: Thank you.
CHAIRMAN PELLEGRINO: Next I have Paul McHugh.
DR. MCHUGH: Thank you, Ms. Lynch. It's very interesting, and there were vibrations here that I would agree with and vibrations, though, that cause me distress. And I want to just go over what a psychiatrist can face and therefore, since psychiatrists are doctors — that's debated by some, but they are. And they face and I face personally issues that relate to patients and their behaviors, particularly. And I think you'd call a behavior, perhaps, a condition rather than a disease, although you wouldn't get that distinction out of DSM.
I have patients coming to me who live by the Duchess of Windsor's view that you cannot be too rich or too thin, and they're emphasizing the thinness that they wish me to encourage in them by giving them appetite suppressants.
And I reject that, saying that already they have lost — for example, they have lost their periods. They are thin to the extreme, and I believe that they are suffering from an overvalued idea, an idea about thinness that now gets into the realm of anorexia nervosa. And I don't think you would object to my deciding that. You'd say that I was acting in the best interest of the patients.
But there's another arena where I've been called a bigot, and that is with young children who believe that they have gender identity disorder. These are children ages ten, eleven, pre-pubescent children, usually boys, who believe that they are actually women, girls, and there are places in this country where they are prepared to give them medications to suppress their puberty with the view that if this boy went through the testosterone-enhancing period of puberty that his idea that he is a girl would perhaps be suppressed or brought into more conflict or even perhaps forgotten.
And I say no, that's an abuse of children. And not only is it an abuse of children, it's an abnormal parenting thing, and the parents should not encourage this. The parents should work on this overvalued idea, promoted, by the way, on the Internet and things of this sort, and stop it.
Now, I am told that I am a bigot because I am dealing with a person's identity. Now, I happen to hold a view with some considerable evidence that this is not the person's identity except in the sense that it's an idea and an idea that we have good evidence that will lead to trouble in future life.
Now, this is an opinion, an opinion based on some empirical evidence, but not an opinion, by the way, shared by everyone. So am I doing the wrong thing? Is this an expression of my conscience, or is it an expression of my professional opinion that not only should I not give them this medicine but I shouldn't refer them to doctors who will give them this medicine because there are such doctors who will. This is the kind of problem in relationship to behavior that I face, and I vibrate a bit from what you said.
CHAIRMAN PELLEGRINO: Thanks, Paul. The next name is Dr. Meilaender.
PROF. MEILAENDER: Well, I have a number of things to say. I'm just going to say a couple. I applaud the attempt to find a way through such deep disagreements. I have to tell you that I don't think it's going to work until you change some of the fundamental moves that you're making. But I just have two questions. The second of them is going to sound really simplistic, although it's the one I actually care more about, and I'd be interested to know what you say.
The first is, if I understand you correctly, the sort of compromise you're attempting to shape depends on distinguishing between the profession as a whole and the individual practitioner. I mean, that's based on your way to try to sort through it.
But what if there's not any agreed-upon body of professional opinion on one or another question? And how exactly do we figure out what the agreed-upon body of professional opinion is? I mean, is it just a vote among practitioners, or how do we do that? Until we can answer that question, we really don't know what the application of your view will look like or amount to. So that's one question.
The other, the sort of simplistic kind of question but that I'd be interested to hear you say something about it — I can put it in just a sentence. What does it mean for one person to impose something upon another?
CHAIRMAN PELLEGRINO: Janet, do you have —
DR. ROWLEY: No, I don't have one.
CHAIRMAN PELLEGRINO: Respond?
Ms. Lynch: Sure. So I want to quickly touch on Dr. McHugh 's questions. I thought those are actually really interesting examples. The first thing to say is no, I don't think you're a bigot. You shouldn't be stressed about that.
For the anorexic patient, I think that that is a true exercise of your medical expertise. This is not the normal situation where we can say the patient's ends are just something that I disagree with. Here you're exercising your medical expertise to say, "What you are asking me to do as a psychomatic matter is wrong as a medical matter." I don't think that's necessarily an exercise of conscientious refusal.
In the case of these gender identity issues, first, you fit nicely into the model I laid out about objections to the service versus objections to the patient. My understanding is you're not providing these services to some patients and not others; you're just saying across the board this is wrong.
And there, too, you're basing it on medical expertise and some empirical evidence about maybe these identity issues resolving themselves or if you take action early in the patient's life brings more problems down the road.
So I think these are all medical expertise issues that are appropriately exercised and not necessarily an example of these conscientious refusals.
Prof. Meilaender, the idea first about what does it mean to impose one's views on another — I know that's sort of, to use your term, gets people to vibrate a little bit. It makes them a little uncomfortable to say that a physician's refusal — that the absence of an act is actually imposing anything on someone else. And I think what we really need to do is focus on the consequences. So I said in the hard case we do have a problem where either the physician wins or the patient wins, and that's what I mean by imposing the view.
PROF. MEILAENDER: Well, but if that's what you want to do, then I think you'll get a lot farther if you drop the language of imposition.
Ms. Lynch: Is there a language that you would find preferable? I don't like the words "win."
PROF. MEILAENDER: Well, you could have said what you just said without concluding with the notion that somebody wins.
Ms. Lynch: But the idea is that there's a consequence as a result of somebody's action or inaction that has an effect on someone else, and that's what I mean by imposition.
PROF. MEILAENDER: And I don't think that's what the language of imposition means in ordinary parlance. And so it's a bad idea to use that term.
CHAIRMAN PELLEGRINO: Are there further comments? Well, I'd like to make a brief one of my own, lest I be misunderstood. I believe very, very strongly that we must preserve individual conscience, that particularly for the physician or anybody else there's a two-way idea behind imposition.
I agree with Gil that "imposition" is a bad word. By taking your own position it does not necessarily impose on someone else. But I do think the reason we have brought this kind of question to the group is that this is where the trajectory of the question is going, that we are facing an incommensurable set of beliefs and that there is — I agree with Robby that we should continue the dialectic without any question.
But in the interim, as a physician, I feel and see and encounter in my own seeing of patients today, an enormous increase in the notion that somehow I should be value-free. And you've heard presentations before this group of value-free physicians.
I'm not trying to convince anybody of my position. I simply want it known for the record that my position — and it's expressed in the literature, so I've not invented something for the occasion — is that one of the most important things is to preserve the conscience of the individual physician in a morally pluralistic society which is becoming increasing pluralistic and increasingly antagonistic to the possibility of even discussing this.
So, Robby, while I think you're absolutely right, joining that conversation has been extremely difficult. I think we should join. On the other hand, I think it's in the interest of this Council to hear an attempt at a compromise.
I think you know that I do not believe this compromise can work because the fundamental question is irresolvable at the present time, and it's a question for the larger society. And this issue with the physician is a much bigger question.
But certainly for the physician it's a crucial question today for those of us who feel there are some things that we cannot compromise upon, and particularly that include complicity in reference as well as complicity in making the action available.
On the other hand, providing information beforehand I think is a very important prophylactic that physicians ought to be initiating, and that is to make known to their patients at the very outset what they will do and what they will not do. But any moral position doesn't have a "do not do" — "I do not do [inaudible] is not a moral position.
I'm sorry for intervening. Occasionally I do this, and I feel like I ought to make that clear since I'm chairing this session, not participating as a proponent except for my own view.
We'll come back at 10:50 and resume discussion. And thank you very, very much for your presentation.
SESSION 6: NATIONAL BIOETHICS COMMISSIONS: LOOKING BACK ON THE PRESIDENT'S COUNCIL AND FORWARD TO THE FUTURE OF BIOETHICS
CHAIRMAN PELLEGRINO: This session, I trust, will be as interesting but not as active necessarily as our last discussions. It's a very, very important one. It has to do with an idea that Dan Davis and I would like to present before you. There is nothing very original about it, but this Council, coming to the end of its term — we don't know exactly when. That will depend upon the new administration and its wishes. But both of us, going back and looking at where we've been and where we have come from, came upon the fact that this council has been in continuous existence longer than any of the others, and so I wanted to just go through a few slides very, very quickly, suggesting to the Council members for their consideration whether or not they would like to be part of or would agree to or think it worthwhile to reflect on our experience, not necessarily to instruct the next administration what they ought to do — I'm sure they have clear notions on where they would like to go and so on — but rather to reflect on this idea of a national commission or President's council or committee. There have been a series of them, and I'm just going to go quickly over them, reminding you of where we have been. And some of the questions that have been leveled at both Dan and me over the past close to four years now that we have been working with this council — three and a half years — and get your ideas about whether or not a considered reflection on those might be useful as a comment on what many people think should be a continuing effort of government somehow.
You all know that bioethics has expanded well beyond its origins in premedical ethics in a very brief period of time, really, to involve almost every aspect of human life, certainly anything having to do with the applications of biology to human affairs. And once you say that you are moving from the halls of academia, where we would argue these things and look at them from a theoretical perspective and then from a practical perspective, moving into public policy. And such a body has a role, and what kind of role should it be? So if you'll give me a few moments to run through a few slides simply to point out where we have been on these matters and some of the questions that have been posed us. And I'm going to ask Peter Lawler, who has been kind enough to agree, to open the discussion on this particular topic.
Let me add that this is not a private project. We think it's a project of all the members of the Council at present, and I want to assure you that all the members of the Council previously, and certainly particularly to my predecessor as chairman. But I didn't think we should move in any way until this group gives us some ideas, not necessarily deciding it here today but discussing the issue and let us know by the way we usually communicate whether you think it's a good idea, whether you would add different questions, or whether the idea, perhaps, does not have merit.
I've just listed here the various commissions, councils, et cetera, et cetera, the years in which they functioned. They were familiar to most of you. And you can see, going down to 2001, we are authorized until 2009, but just in what way and how we do not know. And we will be meeting with the members of the transition team, who will be informing us of what their directions will be and what we can do to be of assistance. But for the point of this particular brief presentation, just to remind ourselves. And I think the very fact there have been so many councils is an indication that very, very clearly the matters we discuss are of public moment, significant moment, and I don't think it requires a great deal of perspicacity to appreciate that these problems will continue or multiply, become more important all the time, and more and more become matters of general public moment in a democratic society.
Here are some of the questions that have been put before us, which we've answered personally and — at least I haven't done any in writing. I don't think Dan has either. The questions that were posed to us and made us think about what our role should be. And I'd like to point out again, this is a set of questions merely to open up the inquiry and then to hear your thoughts.
What should the primary function of the Council be? Should it be primarily educational in a democratic society laying out the issues, at least basic issues without necessarily resolving or solving any of them. We certainly have no policy authority at all, but we are in a position to recommend if we come to consensus. Should consensus-based reports be an aim or the aim? Should we strive more for emphasis on a particular outcome rather than on the educational role of laying out the issues on both sides or all sides?
We have focused on specific issues. To what extent should that be the major — framing recommendations for policy makers moves a little closer to the applied aspect of what we do. How detailed should that be? How close of a liaison should there be, if any, in discussion with the actual policy makers? Again, these are some of our questions and questions others are giving us that we pass on to you.
Should the Council have freedom in establishing its agenda? I think I can say at least in our short period of time — by that I mean Dan 's and mine — we have had the freedom — this Council has enjoyed the freedom of establishing its own agenda, remarkably free. Or should the agenda be in large part laid out for us, for the group, by the White House? After all, this is the President's Advisory Council on matters of bioethics. At the very beginning, those who were in the Council long before I had anything to do with it were dealing with an agenda at the beginning and then had begun pretty much to have their own shaping of that agenda.
What should the connections be to other government agencies? Since we've been in this function, Dan particularly has been in contact with a variety of government agencies who have sought us out and want to know what this group is doing, be kept up with it in having regular conversations, and HHS and other groups without detailing them.
What should those connections be? Should they be closer? Should they be distant? Should they be advisory? Should we seek them out? Are there particular liaisons which we should establish as being more relevant than others?
The national commissions in the past have had much closer relationships with the legislative branch and input both ways. What should those relationships be? Do some of the Council members feel that we should have had a closer liaison to have closer input? Some have done it as individuals, but as a body we have not had formal connections with other governmental agencies. What about the terms of Council members? Some people have argued for staggered terms. Others think, no, continuity. The way we've functioned, largely we've stayed with, by and large, the original members of the Council. Some have dropped off, and we've had some very excellent ones who have taken their places. But what is the best arrangement from your own experiences in other institutions to provide continuity from one administration to the next? Or should they be created anew each time? There are advantages to both that you can think of.
Continuity. On the other hand, a new group coming in and looking at the questions from a new perspective and a different perspective. And this is all, of course, absolutely idealized. There will be partisan points of view that need to be represented. Some feel that would be assured by rotation, others not. Some would be looking and have even suggested to me that we should have a continuing body that rules on bioethical issues, a kind of Supreme Court of bioethics. I put these before you because they have been proposed.
What about our task, if any, in the resolving of interagency conflicts when policy recommendations are in conflict with each other? Again, I'm putting the questions in terms put to us rather than suggesting where we should go.
This question has been asked over and over again. I know there's at least one doctoral thesis in the making on how effectively this Council and the others commissions and committees and others — what has been their impact on actual practice? How effectively have we fulfilled whatever goal we've set ourselves, whether it's educational or policy suggestion or policy formulation. And how do we realize this kind of mandate most effectively in light of what in fact its impact has indeed been?
The impact of the political, cultural, ethical, and religious pluralism on the Council's deliberations. Should it take into account — this is of course a universal suggestion, I think, to put it more practically — take into account at least a large majority of the dominant, ethical perspectives. But the feeling has been at times that through the history of these councils that they've represented one point of view or another. Some think that if it's a discontinuous group that the way to do it, you'll have emphasis one way or the another, and then a new group brings in a new emphasis.
Should we try to represent all the ethical or the major ethical perspectives or should one take the most compelling position after looking at the evidence? Do we offer moral compromise in the interest of political exigency, putting ethics a little bit on the back burner, so to speak.
Looking back at another aspect of it. Are there dangers in a government-sponsored ethics-advisory body? I'm not going to spell these out. You're imaginative enough to know what the possibilities are. Or does the complexity of the problems make it all the more necessary to have a body to unscramble them or to help to unscramble them for public discourse, for public examination or interagency examination, et cetera?
Those are the questions that we've had put before us, taken from commentators. Many have had very, very strong feelings, and I would like to simply — there is a little question for the [inaudible] get your ideas. A) Is there something to be gained by reflecting on the fact that we've had a continuance existence for eight years, it will be. B) What are the feelings of those of you who have particularly been on it for the whole period about these kinds of questions; and, third, what are the more relevant questions in your mind? And would you be willing to — and you don't have to commit yourself at this point — participate in what we have in mind, is that individual members might express their own opinions on these or other questions in something of — for identification — something of an anthology of what your feelings are.
For myself, I believe these kinds of bodies will persist. They'll become more important, and for myself my major concern only is that we do not develop a Supreme Court of bioethics, but others may disagree with me. I've had people make very strong suggestions that we should have one which would say, “This is it,” and that's the easy out, of course, in ethics, which I think quickly devolves into being something other than ethics but ideology.
Thank you. Peter ?
PROF. LAWLER: I have a very limited perspective on this. I wasn't even on the Council from the beginning, and I'm certainly not one of the leadings members of the Council, but what the heck.
The Council has been given two missions: to advise the president and to provide a national forum on bioethical issues. The second mission, it seems to me, has been to inform our citizens on the reasonable controversies that exist over the big issues about the relationship between science — especially scientific progress — and human life. On the second mission, the Council, it seems to me, has succeeded wonderfully.
Lots of folks disagree with me. This Council has been viewed with suspicion and even contempt by all sorts of experts, by large parts of the scientific community, and by large parts of the bioethics community. It's even been written this Council has been the heart of the Republican war against science, and the bioethicists even say this Council is full of a bunch of amateurs. Well, I haven't seen any war against science here, and if the Council is full of amateurs, it's only in the sense of being full of lovers.
We were reminded yesterday that our physicians, such as Dan and Ben and Paul, are certainly leading, really path-breaking scientists who are in love with their hugely important work in both the theory and practice of medicine. Not only that, we are reminded that our great doctors are so much more than mere physicians or scientists, that they are distinguished in so many ways by who they are, what they've done, what they've read, and what they believe.
Dan, for example, didn't just ornament his moving comments yesterday with a cool Kierkegaard quote or two. He really showed us how his deep reflection in Kierkegaard enriches his practice of the art and science of medicine. So Robby was right in a way that there are many human issues about which medicine as medicine has nothing to say. But that's not the same thing as saying that our wonderful doctors have nothing to say. They've spoken time and again with authority, not to mention with wit, charm, and sensitivity about every human issue under the sun.
Now, another thing that occurs to me is that there is a real and deep diversity among members of our Council about who we are. That diversity was shown last session in that dispute been Janet and Alfonso. The differences that separate our Council members are really pretty fundamental, and they reflect at a very high level the intellectual and moral diversity that characterizes our country as a whole. But these disagreements, the Council members have shown us, aren't unscientific, and they certainly haven't been about shutting down real argument. This is, not only have they been civil and respectful, they have never been based on ignorance of or hostility to what we can know through science or ignorance of or hostility to the amazing things science has and will do for us.
So this national forum has shown us that reasonable scientifically informed and eloquent men and women disagree on what it is we can know, on who we are, and on what we're supposed to do in our particular time and place. And it's those deep and reasonable disagreements that make bioethical issues so tough for our country. So let me just say two things: I hope President-Elect Obama continues the same level of excellence and the same degree of moral and intellectual diversity that we find on this Council. Let me also say I've learned so much just sitting here and listening to you all. Thank you.
CHAIRMAN PELLEGRINO: Thank you very much, Peter. Any other members of the Council? Dr. Dresser.
PROF. DRESSER: Thank you. That was very eloquent. I'm not sure about where to go with this idea. One thing strikes me. If we were to think about issuing a report or something with just our views, I'm not sure that would be as much of a contribution as some sort of broader conversation. It might be risky to organize, and it would have to probably be under the auspices of an academic institution. But a conference where those of us who are here who would like to participate could, but to have people from other government groups, the President's Commission, national, and so forth. And then also people who have not been part of the system. Some people to speak and also perhaps some ordinary people who might have some thoughts about this work.
If that could be done in the spirit of civility, I would think that that would be more interesting and less insular than a report that would only come from this group, perhaps provide more — I don't know if there is such a thing as progress, but move the ball.
A couple of other points. I think this whole idea of how a group like ours and other groups can contribute to policy depends on what the request is when the body is formed. So the national commission has specific policy objectives. We did not. In general, bioethics has a very tangential impact on policy. We don't — for example, we hope to have a report on access to health care, but we will not be able to include the economic perspectives, all the other areas of expertise that one would want to be included in the formation of policy. So I think it's rather arrogant to think that a group like this would ever have a leading role unless it were in a circumscribed situation like the national commission to propose the basis for regulations on human research.
And then the other question is, how do you — have you had an impact? How would you measure that? That would require very good empirical research. Certainly if you're talking about educational impact, you would have to figure out a reasonable way to assess how many educators has this reached? How many students has this reached? How many hits on the Web site of people of people who have read the reports, and that would be a very difficult, I think, task to take on. But I think if you really want to measure the impact, that's how you would have to go about doing it.
CHAIRMAN PELLEGRINO: Thank you very much, Rebecca. Carl ?
PROF. SCHNEIDER: I have been here such a short time compared with most of the people here that I don't really feel very competent to talk about this commission, which seems to me to be quite distinctive in the way that it's approached its worked compared with its predecessors. I have, however, read the works of the predecessors at great length. I'm currently writing a book about the regulation of human subject research, and so I have had to go back 30 years to read these reports. And as a way of making policy — policy here and not just talking about some of the ethical issues that are involved — I think these commissions have proved to be — again, I think this Council has taken a very different kind of approach in trying to talk more narrowly about some of the ethical issues that are involved.
The other commissions have essentially been importantly responsible for setting up the present system of human subject research, and they did it in a dismally bad way. And the consequences have been disastrous, and they have never been investigated. There has never been a systematic attempt to justify the human-subjects-regulation system. There is recitation of past scandals; there is discussion of what in principle researchers might do wrong. But despite the presence of these commissions that year after year issued these reports, there was never a systematic attempt to say, “These are what the problems are,” “These are what the solutions are,” “This is how we will measure success,” “This is how much success we will have,” and most of all, “This is what harm has been done.”
The system was launched, and it has grown far beyond the imagination even of the founders in a way that goes unchecked because there is no mechanism for checking it, there is no mechanism of accountability at all. So I asked myself how could such a damaging system, a system that seemed to me to be costing lives and costing large amounts of economic resources in exchange for very little good, how could such a system have gotten started? And I think the answer is that it's very hard for a group like this, for a council, not to reflect the conventional wisdom of its time. And conventional wisdom leads people to easy solutions and to easy definitions of problems and also to an awful lot of bad prose.
The agony of reading these things, and one of the pleasures of reading the reports of this Council has been that they were written in English in a recognizable form.
I'm not sure where one goes from all of this, but I think that it might be worth an inquiry into the products of this kind of group as seen 30 years later. Such an inquiry, as nearly as I can tell, has never been attempted.
One last thing. Insofar as it's a bioethics council that tries to talk about the kinds of problems the bioethics literature addresses, the Council has a difficulty because bioethics isn't really a discipline. It is a collection of problems that people share an interest in, and it is not a field of study that has been able continually to attract first-rate people to think about it. It is a field of study that has been very much, I think, weakened by the role of bioethics as a cultural and ideological movement.
So insofar as a group like this is parasitic on inquiry, it is parasitic on a not very nurturant — what do you call the thing the parasite feeds off of? Host. Well, that's a very strange word under these circumstances.
CHAIRMAN PELLEGRINO: Floyd ? Floyd Bloom ?
DR. BLOOM: Just to speak to your item on the agenda, it seems to me looking back is not the right attitude, that what we have accomplished, what the Council's role in this matter of bringing to the public's attention the ethical issues in advances of science or technology has been accomplished in the books that have been written or are in press now. We don't need to look back at those. They stand and speak for themselves. I think what might be helpful to whatever the next administration wishes to do in this area is to look forward and see the challenges that we were faced with that we couldn't overcome. And to be able to specify for the public what we need to know to be able to overcome those, because that's where we are.
If I look at our arguments yesterday or futility, what scientists stand for is the fallacy of futility. What's futile today may not be futile tomorrow if we advance knowledge in the right directions. And so I would suggest that a brief statement on the challenges that you've listed in these seventeen questions would help the next body challenge to do what we were challenged to do.
As Peter said, as have many of us, we've learned a lot from each other during the times we've debated the issues and interpreted the signs for each other. And a continuing body should examine those kinds of issues.
In my field of neuroscience, the impact of ethical considerations has become so intense that a society for neuroethics was originated and meets yearly to discuss these things. Maybe the future of bioethics is a similar kind of public scientific society that's devoted to these questions but not necessarily a federally sponsored entity to do so, because any federal administration will have its skeptics and its doubters, but the issues aren't going to go away. They've been with us every since technology stated to improve life and going back to the printing press and probably before. Things always seem to have evil sides if we let the sinister overwhelm the potential good for the public. So I would encourage you to look forward, not backwards, and to set some criteria and challenges for what lies ahead for those who wish to pursue this matter.
CHAIRMAN PELLEGRINO: Thank you very much, Floyd. Paul McHugh and then Gil Meilaender and Robby George. I didn't miss you, Robby.
DR. McHUGH: I was a member from the beginning, and I want to say something fairly simple about what has been most successful for this person, myself, who would be described by anybody, I suppose, as an amateur in bioethics in the sense that I have not made it a profession. But I have learned a lot from this Council, and I particularly like two things about the Council and its workings.
The first think I very much appreciated about the council is its diversity from its beginning, diversity in opinion, diversity in political party, diversity in experience. Some of our members were really card-carrying bioethicists, but many of them, like me, were interested in matters, I suppose moral and ethical primarily, because of the work that we were doing every day. And that kind of council, I think, led to wonderful capacities to learn as we went along.
The idea built into our mission statement that we were not to make consensus a primary purpose was very important in that way, so the Council was structured with people of diverse experiences and of diverse opinions, and it worked in that way without seeking to find a consensus. But it did seek something else. It sought — I believed and did well — in trying to spur public discussion in the process of dealing with contemporary, real scientific issues.
Where I learned the most and where I think the Council filled the pages of the public besides what we've published but also in what the attention of the public was was when were — when the best scientists in the world were brought here to describe the scientific experience, the scientific future, and the scientific issues, so that we all became at least reasonably familiar with that regardless of what we were. And then from there we had our discussions about our concerns, our worries, what we would like to see happen, what we wouldn't like to see happen. Those kinds of things drew the attention of the public to our Council and I think accomplished an important purpose above and beyond our very important publications.
So I'm absolutely in agreement with Dr. Bloom. I think we should look forward in the sense of what the future holds using the experience of the past. That is, get a diverse council. I don't think it should be a council made of representatives of particular things but simply active people working on active issues that would have some encounter with these matters and then bring to that council the best scientists you can have and have the conversation flow from that as people get informed.
This would really teach the American public not only what the issues were but might also show the American public the way you approach these matters: learn the science first and then discuss it.
CHAIRMAN PELLEGRINO: Thank you very much, Paul. Gil ?
PROF. MEILAENDER: Well, I'm afraid I'm actually channeling Paul, but as any of you who have been to faculty meetings know, the fact that someone has already said what you think does not mean that you should not say it also. And I'm in a sense going to just concur with his two points.
I wanted to say one thing first. I'm not sure about the notion of a kind of a general project to take up these questions, partly for reasons Rebecca mentioned. I just think that to really do it well would require a kind of approach that probably is not within our power to undertake at this point and simply a collection of our personal observations on it. I'm just not sure how useful that would be.
I will say I can actually think of something I think we should try to do that would bring us full circle, and that is that if we were given time and opportunity, I think it would be good for us to bring up to date a report on what's happened with stem cell research. And before Janet jumps on me here, I say not in order to revisit the question of embryos. We don't need to argue that question again, but simply informatively to bring up to date what the state of the research is. And one needs to render no judgments whatsoever on that but simply to do it.
That, I think, would actually — that was the one issue that we were charged to deal with, and it would make sense to me to do that if we wanted and had opportunity to sort of bring something yet to conclusion.
And just briefly, I think Paul is right, that to me the two real contributions of the Council are, one, that we really did have genuine disagreement here because we understood that our task was not to reach consensus. I mean the executive order that establishes us says that we're under no obligation to reach it. If you think of yourself as whispering in the ear of legislators all the time and having to come up with something for them if you have to kind of wield a power of that sort — I mean, you may accomplish certain things, but you generally get driven to a lowest common denominator. You don't really go deep because you have to find something that everybody agrees upon, and if we find something that all of us around this table agree upon, most of the things each of us cares most about will have gotten eliminated in the process. Now, you know, that's useful. That's why we have legislators. It's got to be done. But we did something a little different, and I think it was good that we did it.
And the other thing, I was glad Paul mentioned it. I think many of our best moments have been when we brought in people not to engage in ethical reflection for us, but people who were just experts in some area of science or technology. And we did our own ethical thinking about it. We didn't agree necessarily on it, but that was part of the genius of our best moments, I think. It would be a shame if some future body didn't continue to do that.
CHAIRMAN PELLEGRINO: Thank you, Gil. Robby George.
PROF. GEORGE: Thank you, Dr. Pellegrino. If you will permit me, I would like to begin because I don't know whether or when I'll have another opportunity to do this. I'd like to begin by expressing my gratitude to my wonderful colleagues on the Council. I am one of the members who has served from the beginning, and it's been an extraordinary blessing to serve with such people. I have learned from every single one of you, and I'm grateful for that. And I must say, Dr. Foster, I think I've learned the most from the people with whom I've disagreed the most profoundly on important issues. And that's very fitting. I think that that should be the case, and it is indeed the case.
I also want to express my gratitude to the extraordinary staff that we have had from the beginning. It has been such a pleasure to work with the members of the staff at this Council.
I shouldn't single people out, but we have wonderful leaders in Dean and Yuval and Dan and Carteret, General Counsel's Office. And if I may just say something very personal. Diane Gianelli has been such a wonderful person in enabling me and, I'm sure many of you, to have a kind of direct access to the information that we need to do our jobs well.
I also want to thank you, Dr. Pellegrino, for your leadership of the Council, which has been magnificent and, of course, the great, great Dr. Leon Kass, who was an exemplary chairman for our Council and who led us through very difficult deliberations with such wisdom and with such grace and always with impeccable fairness. I hope that the reports that we have produced, which I think will stand the test of time — every single one of them will stand as a tribute not only to our Council but particularly to Dr. Kass, whose leadership made them possible.
I also want to thank someone who is not being thanked very much these days. I'd like to thank President Bush for constituting such a council. He is ultimately responsible for the blessing I have had of your colleagueship, and I certainly want to thank the President for that and for the honor of being able to serve on the Council.
President Bush made quite a remarkable decision when he constituted this Council. It certainly would have been reasonable and acceptable for him to have selected for the Council members who down the line agreed with him on the basic moral foundations of the issues that he Council would be charged to address. That would have been more in line with what previous presidents have done with their councils. There would have been nothing wrong with it, and in some ways there advantages to doing that. The President is the guy who won the election; it's his values that really are in the driver's seat. And a council who shared his values down the line could help in helping him to apply those values to new problems or difficult bioethical challenges.
President Bush opted for a different course. President Bush opted to appoint a council that was truly diverse, not only in terms of disciplinary perspective and experience and background but also in terms of moral point of view. He appointed to the Council in full knowledge many people who disagreed with him about fundamental moral questions, including those pertaining to the initial issues that he placed on our agenda — embryonic stem cell research and human cloning. He appointed people who voted for the other guy in the election in which he emerged as president.
That was quite a decision. He got no credit for it. He got no credit for it. In fact, you will recall that many in the media and some, I regret to say, in the world of bioethics accused the president at the very beginning of having “stacked the Council,” and indeed of having stacked the Council with religious conservatives, people who entirely shared his perspective and even his religious outlook.
There was even an article, I regret to say, in the Washington Post that you will all — those of you who were on the Council at the time will recall in which that allegation was put into the foreground.
So he didn't get the credit he deserved for this extraordinary step of appointing such a diverse council. He didn't get the credit for the open-mindedness and the openness to argument and ideas that was represented there. And it increases the scandal of the accusations to which Peter referred, that the Council was hostile to science or hostile to inquiry.
In fact, it's a remarkable council, I think, on any account, the most diverse council that has ever been constituted. We will see what President-Elect Obama decides to do, whether he will follow President Bush's example and appoint a council that is diverse, whether he will reflect a kind of openness to argument and to different points of view on a council in the way that President Bush did, or whether he will go in the opposite direction and appoint members of the Council who basically share his moral convictions and ask them to help him apply them to other bioethical issues that the next Council will face.
Certainly if he chooses to go down the path of appointing a diverse council, I will be the first in line to applaud him. If the council includes a substantial number of people who disagree with his moral perspective, who perhaps voted for the other guy in the election from which he emerged as President, I think that would be worthy of very great applause.
Dr. Bloom is right. Our reports will speak for themselves, and I do think that they will stand the test of time because they are examples of laying before the public the very best arguments that are to be made on competing sides of important issues and laying before the public accurate information, information stated in terms that are not evasive, that do not degenerate into euphemisms, that do not function as rhetorical ploys. The Council's reports are written in straightforward language. The proper words are used to name the things that they are meant to name. The facts are laid out.
I applaud you, Mr. Chairman, and Chairman Kass for being open to having dissenting and concurring reports. We were never pressured to form a consensus. That, of course, is in line with the executive order with which we were founded, and our chairmen were faithful to that, and good for them.
I think the diversity of the Council, particularly the diversity of moral points of view as well as disciplinary perspective, helped very much with a problem that I think Professor Schneider identified, and that is having councils reflect conventional wisdom, even the conventional wisdom of the kind of establishment or even an elite. It would be very hard for us to fall into the sin of simply reflecting the conventional wisdom because so many of us have different points of view. If there is a conventional wisdom, is it Robby George's or is it Janet Rowley 's? Whose conventional wisdom is it? If you have Janet, Dr. Rowley, on the Council, and you have Dr. Meilaender on the Council, there's' going to be different wisdoms, and none will be the conventional wisdom.
And with that, Mr. Chairman, let me thank all my colleagues once again and also thank you.
CHAIRMAN PELLEGRINO: Thank you very much, Robby. Further comments? Yes, Janet.
DR. ROWLEY: I'll take a lady's prerogative. Firstly, many of the comments that Robby just made would be ones that I would echo because we have been blessed with the highest quality of colleagues and also a very, very helpful staff. And I'd like to go lower than Robby did in terms of also thanking Emily, who is not here anymore, but Judy for helping me get to and fro and not miss planes and other things. I'm grateful for that.
I think that my comments — and they're obviously comments for the future mainly — have to do more with procedural issues than substance, in part because I think it's–each one of us looks at science and sees issues coming down the line. Floyd has already mentioned the neuroethics. Obviously we've touched in many sessions on the ethical issues that are raised by genetics, of which the report on newborn screening is just one aspect. As we know more and more — or people know more and more about their own DNA and society does, how are we going to use that information, and can we focus on the fact that different groups are going to have differences in DNA? And you have to really put it in terms of differences, not a judgmental thing that this gene is better than that or this difference is better than that. And that's going to be a challenge for many of us and for the future.
One other thing I'd like to say with regard to Robby's comments. I think the diversity of the board, the Council, while it is certainly ultimately to President Bush being willing to accept the diversity, I know in my own experience I wasn't an especially acceptable nominee to the White House, and it was Leon Kass who I think gets the major credit for the diversity of the Council and also for, if you will — and I'm probably using the term wrong — the Socratic way in which the Council just operated in discussions where people talked in turn, just as you have instituted. The one thing was that Leon included himself, and I think we have been the poorer for it, because you yourself, Ed, have not made comments about matters on which you've thought long and deeply. So I would encourage you to take a more active role.
But that isn't — the procedural issue — we tended in the beginning to focus on specific issues and really focused in terms of trying to have several meetings on a particular topic and then with the notion of writing a report on that particular issue and moving on. Now, it's true that after stem cells we did sort of search for what would be the next issue and had several brought before us, some of which we agreed would not be fruitful for our discussions.
I am concerned right now that we may have too many irons in the fire. My own bias is to say that for real influence on the future and on policy — and I don't see any reason why we can't have reports that may influence policy — the one on access to health care is for me the — I would put at the top of the agenda. So I think having a council such as this continue, I think diversity in the council of both points of view and background and expertise is critical. And I think that that certainly should be a goal of the next president.
CHAIRMAN PELLEGRINO: Thank you very much, Janet. Just to reassure you, on the 24th of November you will be receiving another close-to-the-end version of the health question. So we have not dropped that at all. It will be completed. We intend to complete all the things we have going now, and we appreciate very much your interest in our keeping that momentum going. Thank you.
Bill, I'm sorry. I keep looking the other direction. You have to forgive me.
DR. HURLBUT: I first want to say that I think the goal of issuing some kind of a report or even just a statement from our Council — the Council's collective experience and retrospective and prospective reflections — would be a good idea. And it might not have to be very long, but I think it could include both collective, agreed-upon statements and personal statements. I think it could be oriented both externally and internally, if you will. Externally in the sense that we might preempt some of the problems that we as a council had by explaining to the outside world what a council is and what it's expected to do and that it comes, at least in our case, with a range of opinions.
And then internally, I think there are things we could do and we've all learned that we could do that would be better. I have a whole list of them actually that are not big criticisms but ways we could, I think, improve the process and give some hints to future councils as to how to conduct themselves. Just like people have learned over history how other institutions work, including things like medical centers and marriages, we too are a phenomenon that learns as it goes, and I think we could draw on that.
One other thing I just want to say, and that is to add to what has already been said and particularly to what Robby said. The diversity, which I think we've all now agreed is a major element of what has made our — the best of our Council emerge. The diversity that President Bush instituted in our Council is not just kind of a vague respect for the range of opinion but it is a fundamental acknowledgement of the deep seriousness of what we came here to do and the depth and difficulty of the matters under reflection.
I remember the night before our first Council meeting — and I too was on the Council from the very beginning. I came in early and I went running, as I do every afternoon. I went running down around the Washington Monument and the Lincoln Monument, and it was an amazing moment to realize that I was called to Washington along with seventeen other people to reflect on what I think — and I think most of us will acknowledge — are some of the deepest matters that human beings have been ever asked to discuss and deliberate on. I mean, with the advent of biomedical technology, we know we're at a crucial moment in the history of humanity and indeed the history of life itself. For the first time ever creatures are coming into some measure of comprehension and control of the basic mechanisms of their existence.
And when we met the next afternoon, the first afternoon of our first Council meeting, in the Roosevelt Room with President Bush I felt that he understood the seriousness, of the magnitude of the meaning of what we were about, and I remember he said something — I don't remember the exact words, but something to the effect that these issues — he asked us to articulate the best arguments on all sides of the issues. He was very clear about that. And he said something to the effect that he thought these issues transcended time and culture, that he had assembled us in a way that we should acknowledge that these were reflections that would affect the lives of our children and grandchildren, that we all had a responsibility that went way beyond the specific politics of the moment we were in, and that these indeed — these issues and how these matters were conducted and resolved or at least set in the right trajectory would perhaps reflect more in defining his administration than anything else, including the war on terrorism, which struck me as a remarkable and trenchant insight.
I felt it was a great honor to be asked to be part of this Council. I think the honor of it and the importance of it was poured into the way it was framed and instituted, and I think if we can communicate the seriousness of that and what we've learned about how to conduct it to the future councils and to our country as a whole, that would be a really great service.
CHAIRMAN PELLEGRINO: Thank you very much, Bill. Do we have any other comments? We'll have a public session in a moment. That's been our custom.
I didn't think this was going to be a farewell or final meeting, and so I won't make a farewell address. But I certainly feel I'd be remiss if I didn't respond to some of what was said. Certainly I was most impressed when I was asked to join this group not only with the diversity but with the level of discourse, with the fact that the people I knew inherently certainly must have differed on some very fundamental questions. Their capacity to communicate with each other and to enter into a true dialectic was very, very impressive.
I want to thank all of you for allowing me to come in in the middle of the play, where you had been led, as you said Robby, with a superb leader. I think the construction of the Council was certainly Leon Kass 's work, and he should have full credit for it. And I feel that you are kind and generous to accept an interloper into this group, because Leon himself decided he did not wish to continue.
I hope that my concern with keeping on time wasn't irritating. And you're right, Janet. I have deliberately refrained from introducing my own ideas to a significant extent because I feel the job of the chairman is to allow and pull and draw the Council members into the discussion, and that's always been my aim. I think my thoughts are expressed in far too many publications, so I felt no need to burden you with some of those same expostulations.
But in any case, I do want to thank you very, very much. I do not know, neither Dan nor I, how long we will be in existence after this time. We are authorized, as I said, until September '09, and what that means we will try to discern.
And I want to say also for the outside world that those who used to greet me by wondering how I was surviving under the enormous pressure to do it this way or that way from the White House, there has absolutely never been any suggestion of that. And to me that's been the remarkable thing about this group, because I have met with virtually every one of the other groups you saw on that board, and they were not always as fairly and evenly divided as this group. So thank you all very much.
SESSION 7: PUBLIC COMMENTS
CHAIRMAN PELLEGRINO: We now come to that part of the program where we ask for public comments. I have two requests, one from Susan Poland and the other from Doris Goldstein, both people I know very well. Susan ?
MS. POLAND: Thank you, Dr. Pellegrino. I'd like to thank all of you who are here and that are not here. I have enjoyed listening to your comments, your criticisms, and all of the presentations that I've heard over the years. They're very enlightening and very useful.
Some of you will hear comments I'm going to make that will second what you've said earlier. And just because I don't remember your name right now doesn't mean I don't think any less of you. I essentially have three comments to make. This is going to be based on a piece I wrote about national commissions, particularly the lineage here, and also commissions throughout the world that I did when I was — it's now on the Web as a Scope Note with the National Reference Center for Bioethics Literature. The other part is being based on what I've seen here and what I've seen in other meetings as I worked over at the Kennedy Institute of Ethics.
The first point is, this is a federal body or a federal institution — whatever you want. Its character is federal. I really like the fact it relates to the executive branch primarily and only. I would, however, like to see a new take — a different stance. Rather than worrying about the product of what you're making — I'm not saying don't product reports, but rather than worry about that product at this unique time when so many people are involved and needing leadership, focus on relationships, and see some more liaison done with Congress, whether it's Congressional and Research Service or what would have been OTA, and the judiciary, such as the Federal Judicial Center, see what the impact of some of this would be so we don't have a shadow fiasco, we don't have tons of abortion cases clogging up the federal judiciary. Just work on those liaisons at that federal level.
The second point is that this is also — oh, back to the federal part. I'd also like to see more done within the executive branch and find out what the clinical center's bioethics department does compared to you, find out what some of these other committees do compared to you and bioethics and how they relate. They were — the Secretary of Health and Human Services and how those function.
The second point is, this is a national body, so I'd also like to see it work with the states. There is an Office of State Courts down in Williamsburg. There might be others. But as a national body you also work with other countries. You are American or US point that contacts them. I remember well that meeting where these people from Britain came in and talked about genetics as a policy body and then they talked about it as a regulatory system, and that was very helpful to understand those two things.
My third point has to do more with technology or education. I always regretted the fact that you did not televise or otherwise put on the web or anywhere some of these things, because what's put in print isn't necessarily always what's up on the screen. And there's so much technology out there and so many young people involved in looking at government now and actually in college or high school that you can put a lot of your points of view out there and have people pick it up, because I really feel like this is — it's critical to be diverse. I mean, there are other countries that have 20 scientists all of the same kind and one token person that's with the public. It's really critical to have a different point of view and different backgrounds and to have really good science put out, and I think you can — with the speed with which science develops, you can actually educate people broader about it.
I've always felt bad about two comments. One is that Roe v. Wade was decided prematurely. There was never enough public debate. And the other one that we hear sometimes in bioethics is everything goes back to abortion. And, of course, in this Western Judeo-Christian culture, that's where we're sort of stuck on debating those things, but at least when we debate, or listen to your debates, it is so diverse people will realize there is not one opinion, and they'll work out for building relationships that way.
And that being said, I can't think of anything else except thank you.
CHAIRMAN PELLEGRINO: Thank you very much, Susan. Doris ? And I hope the Council members will give me the last word when Doris Goldstein is finished, because I have another statement to make very, very briefly.
MS. GOLDSTEIN: Thank you for the opportunity to speak. What struck me in your slides, Dr. Pellegrino, was the comment about effectiveness and about the educational impact. And as a librarian — I'm at the Kennedy Institute also at the National Reference Center for Bioethics Literature. And one of the amazing things we've seen as we've added the digital archive of the prior commission was the interest in those materials. So you may look at your impact right now, but the effectiveness is ongoing. As a librarian, I'm interested in the preservation of knowledge and in the dissemination of information. Our times have never been better. We have the opportunity to — we've had people come from as many as a 141 countries to our website in a quarter. So you are having a worldwide impact that will continue far beyond the life of this Commission, should it be till September of 2009.
The other way that you're having an impact is, as I looked in the organization's database that we have on our Web site, there are 60 organizations like yours throughout the world, so this is not an isolated phenomenon, even though it has a long history in the United States. You are having an impact on how people deliberate on these issues worldwide. So I think, you know, you should have no doubt about the importance of what you've done.
So it's really thank you.
CHAIRMAN PELLEGRINO: Thank you very much, Doris. And I'd like to conclude by thanking what we in physiology, some of my colleagues will remember, used to refer to as — forgive me for the Latin, but that's one of my failings — vis a tergo, the force from behind. And the force behind this whole organization since I've taken it over is an official government representative right here on my left, Dan Davis, who really has done the work of the Council, and I think all of you are very much aware of that. It's totally impossible for me to have done anything without his assistance, but not just his assistance. We mentioned also the other members of the staff. I'm not going to mention all of them. You know them, those of you, as directed chiefly to the members of the Council.
I also want to thank my special assistant, Marti Patchell, who had the perdurability to survive working for me for some twenty-five plus years, and, Marti, I thank you enormously. I also thank all of the young, eager, excellent researchers who have done the spade work for both Dan and for me.
As I said, I didn't want it to be a farewell address, but lest it go by that the chief vis a tergo, the push from below, the push — the guy who pushes me from time [audio lost]. He wants to be sure that you hear it.
Well, anyway, I won't go on and on. I presume we will see each other again. But, Dan, thank you very much. Marti, thank you. David, everybody. I haven't seen all of you.
A final word. Doris and Laura and Susan represent the bioethics library at Georgetown, which I'm going to say without equivocation, and I'll take anybody on who challenges me, is the very finest bioethics library anywhere in the world. And they are the best bibliographers in the world.
Thank you very much.