Since the 1970s, the United States has had a succession of national advisory bodies to provide Congress or the President with expert advice on topics related to bioethics. As science and technology continues to develop with increasing speed, many are wondering: what does the future hold for national bioethics advisory bodies? In this episode of Ethically Sound, host Hillary Wicai Viers talks with Bioethics Commission member Dr. Daniel Sulmasy and Prof. Alex Capron, and discusses the Bioethics Commission's reflections on the past, present and future of bioethics advisory bodies.
Since the 1970s, the United States has had a succession of national advisory bodies to provide Congress or the president with expert advice on topics related to bioethics. As science and technology continue to develop with increasing speed, and the field of bioethics expands, many are wondering: what does the future hold for national bioethics advisory bodies?
Welcome to Ethically Sound: A podcast of the Presidential Commission for the Study of Bioethical Issues. I’m Hillary Wicai Viers.
Today we’re talking with Daniel Sulmasy who holds the Kilbride-Clinton Chair in Medicine and Ethics at the University of Chicago, and is a member of the Bioethics Commission. Before we talk with Dr. Sulmasy, we’ll hear from Alexander Capron, who chaired the Biomedical Ethics Advisory Committee from 1987 to 1990, and served on President Clinton’s National Bioethics Advisory Commission from 1996 to 2001. Before his appointment to these commissions, Alex served as the Executive Director of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, called the President’s Commission, which advised the president from 1979 to 1983.
One of the things about the President’s Commission was that having been established by an act of Congress, we had our own direct appropriation. We were a line item, a very small line item, in the federal budget. So, that meant that I had to go up to Congress to testify before the Appropriations Subcommittee that handled our area of government.
It turned out that the subcommittee was chaired by William Natcher, a long-serving member of Congress from Kentucky, who was rather legendary for his attention to detail. And so I was warned that I needed to be highly prepared for that hearing, and I went into the hearing room with a little trepidation, and I found that Representative Natcher was indeed very well informed about our budget. I had been concerned he might find our work somewhat esoteric but he didn’t seem to be worried about it being a waste of money, as long as the money was spent in a[n] appropriate way.
So we asked me about the Commission, about its agenda, and how we were going about our work, and that led him to ask me about our staff. I informed him that in addition to the usual support staffs, such as secretaries, a bookkeeper, a press officer, some research assistants, we had a number of professionals including a couple of lawyers, a physician, an economist, two sociologists, and a philosopher. “A philosopher?” “Yes, sir, we have a staff philosopher.” “You’ve hired a philosopher?” he asked again, apparently incredulous at such a misguided action. “Well, Mr. Chairman,” I said respectfully, but really rather worried that our whole operation was now thrown into doubt. “He’s an ethicist, you see.” “Oh,” said Mr. Natcher. “An ethicist, well that’s all right. An ethicist, that’s all right.”
So it became clear to me there that while I wouldn’t have thought of using the word “ethicist” in the halls of Congress, that was a person who was appropriate for a bioethics commission, unlike a philosopher, who I think in Mr. Natcher’s view was someone who spent his day just sitting, thinking grand thoughts and not doing much that’s relevant.
That was Alexander Capron from the University of Southern California.
While all the bioethics advisory bodies we’ve had in the United States have shared similar goals, they’ve differed in their composition, methods, and areas of focus. As we heard, the commission that Alex Capron served on was organized and operated very differently compared with the Bioethics Commission appointed by President Obama. These differences in structure and function matter because they can influence outcomes.
Toward the end of its tenure, the Bioethics Commission held a series of public meetings to reflect on the past, present, and future impacts of national bioethics advisory bodies, both in the U.S. and abroad. A great deal has changed since the first bioethics advisory body was authorized in the 1970s. Science and technology continues to develop with increasing speed. The field of bioethics, in its infancy in the 1970s, has since expanded and its resources are now readily available across sectors. And as the world become increasingly connected, bioethical issues are playing out across borders—whether that’s tackling disease outbreaks overseas, or developing cures for disease such as cancer and Alzheimer’s that affect people across the globe.
By looking back at what worked and why, the Bioethics Commission’s meetings helped imagine the best role for national bioethics advisory bodies in shaping policies and practices that ensure ethically responsible development and use of science and technology in the future.
You can watch the discussions online at bioethics.gov.
Here today to talk with us today to talk about the future of national bioethics advisory bodies is Dr. Daniel Sulmasy.
Dr. Sulmasy holds the Kilbride-Clinton Chair in Medicine and Ethics at the University of Chicago, and he’s a member of the Bioethics Commission.
Welcome, Dr. Sulmasy, thanks for being here.
Glad to be with you, Hillary.
As the Bioethics Commission nears the end of its tenure, you’ve spent several months looking back upon the contributions of commissions that came before. Why is the past is still applicable?
First, I think the past is applicable because many of the most basic ethical questions are perennial. We may encounter new problems, but the most fundamental questions about human finitude, the meaning of human progress, the role of balancing relief of suffering versus other ethical principles, questions of cost, and justice are always with us. And we’re not the first commission to look at those questions. The particular topics to which we apply those sorts of principles may change, but the perennial questions are with us, and we have a common goal in applying those principles to that and analyzing particular problems that we confront in each era.
What legacy does the Bioethics Commission leave behind?
I think personally that one of the key contributions that this commission has made was in our very first project. We have been concerned with the ethical analysis of emerging biotechnologies in a way that previous commissions really probably haven’t focused on as much as we have.
And the delineation of the five principles that we put forth for analyzing the ethical impact of new biotechnologies I think is a great contribution. Those are the principle of public beneficence, the principle of responsible stewardship, the principle of respect for intellectual freedom but tempered by responsibility, the principle of democratic deliberation, and the principle of justice. And I think those are going to last because I think that questions about biotechnology will continue to emerge.
Dr. Sulmasy, as we look forward, what do you think are the most pressing ethical issues facing the U.S.?
One will be, I think, advancing biotechnologies in general. The CRISPR technique for gene editing is certainly one that’s already on the forefront, and will continue to occupy us for some time, but there are probably other unanticipated technologies that one really can’t even predict at this moment.
I’m an internist. I do mostly care at the end of life and most of my ethical questions that I address in my own work still continue to revolve around care at the end of life. I can tell you from my own clinical experience that 90 percent of the ethics consults that we do at a hospital like the University of Chicago still concern questions about forgoing life sustaining treatment, how far to go in keeping someone alive, and I think those questions will continue to be with us, even more forcefully as biotechnology continues to advance.
The increased use of genetics in medicine, particularly under the rubric of what’s called personalized medicine, I think is going to raise questions about the privacy of genetic information, will continue to raise questions about how far we should go in terms of personalizing and individualizing treatment, particularly its cost limits. I think we see with issues like anthrax vaccines that our Commission dealt with, or the Ebola virus that our Commission dealt with, and now the Zika virus, that emerging infectious diseases and other public health questions will continue to raise ethical issues for us.
I think it is also important to recognize that bioethics is now global because biomedicine is now global, and this commission, I think in particular, has been very cognizant of that and invited discussions with scientists and physicians and bioethics commissions from other countries. And I think that’s been a valuable contribution that we’ve made to being a part of an international community of bioethics commissions.
What advice you would give to someone who is asked to serve on a national ethics advisory board?
Well I think I’d keep it pretty simple. I’d say, be prepared to work hard, be open-minded, willing to listen to fellow commissioners and other members of the public who bring different viewpoints, recognize that you’ve got a great platform. That commission is a really national and internationally prominent bully-pulpit. But also soberly recognize that your role is advisory, and not everything that you say is actually going to be taken up and enacted immediately, although, I think it will have lasting input.
Dr. Sulmasy, it was a pleasure to have you here with us today. Thank you.
Thanks, Hillary, a delight as always to be with you.
You’ve been listening to Ethically Sound: A podcast of the Presidential Commission for the Study of Bioethical Issues.
Thank you for joining us.
You can check out our full series online at bioethics.gov.