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Friday, October 18, 2002

Session 5: Regulation 8: International Models (United Kingdom)

Baroness Helena Kennedy QC, Chair, Human Genetics Commission (HGC)

BARONESS KENNEDY:  Well, can I say immediately on behalf of Suzi Leather and myself that we are enormously privileged to be invited to join you this morning.  And we know of your work, and we are very thrilled that you want to know something of ours.

I am also flattered on behalf of Britain that we are seen as being leaders in this field.  Usually we look to the United States and follow, and we are usually about 10 years behind on most things. 

And so it is rather nice for there to be an area in which we many have some experience from which you could draw.  But I think it is difficult.  I always feel that law is cultural, and the ways in which we deal with issues inevitably are going to be very different,

But it is useful to hear from others about how they are addressing the many challenges that there are as a result of the developments in human genetics.  There is no doubt that with those developments come new ethical, social, and legal challenges.

And our experience is that there is amongst the public concern, and they express it in terms of eugenics, of course, and concerns about human cloning, but they also express it in relation to privacy, their fears about the invasion of privacy, and they do want to have control over their own genetic information, and fears about others having their hands on that genetic information.

And they also feel that in many ways the development of science in this area is moving at such a pace that they really are worried that somehow as a nation we are not keeping up with the speed of progress.

The Human Genetics Commission, therefore, was set up three years ago.  And I think it is important to look at the context in which that happened.  We have had a very big backlash against genetic modification of food when the public became aware that there were many research programs in operation already using genetically modified processes in food production.

The public felt that they had not had enough consultation and that they had not been aware of those developments, and that in some ways there was almost a conspiracy of silence amongst scientists, government officials, and corporate interests.

And it became we felt somewhat inflamed partly because there had not been enough public debate.  So I think that government is very conscious of that, and that dissents, that way in which progress was taking place without sufficient consultation and connection with the public interests, that when it came to human genetics that we shouldn't fall afoul of the same problems.

And this was particularly important because on the whole it was recognized that the public felt benefits in this area, but their apprehensiveness may become somewhat inflamed, particularly in the way in which our tabloid press often had headlines describing Frankenstein science and so on.

So the commission was set up three years ago and as I said, it was set up as really to look at the ethical, social, and legal implications of the new science, and the That it would really be giving advice to government on the issues as they were coming at us.

And one of the reasons that the Commission was established was because there were already a number of different bodies, there were a number of different committees which were dealing with these issues, but it was felt that there were gaps between them and that some issues were falling between those gaps, and that there should be an umbrella over a number of the committees, and the Commissioner's role was to provide that umbrella.

The Commission has a wide range of experiences, rather like your own committee.  It has on it really people who are drawn from ethics, law, industry, patient groups, consumers, social scientists, geneticists, and other health care professionals.

And that really was to reflect what we saw as being the central issues.  I was appointed as the Chair, and the way that appointments took place was that there was an advertisement in national newspapers and through journals inviting application to join the Commission, and people did in quite significant numbers apply to be on the Commission.

And I was publicly, or not publicly, but privately, but I certainly responded to the invitation to apply for this role, as did a number of people.  And we were interviewed, and there was an interviewing process, and I was eventually appointed.

I would like to think that's because, as a lawyer, I might ask difficult questions.  But also it is fair to say that I have a background in human rights, and it is felt that at the heart of this there are many human rights issues.

So the Human Genetics Commission was established, and we have two ministries to whom we answer; the Ministry of Health, and the Department of Trade and Industry, which has within it the responsibility for science. 

And so I have two specific ministers to whom I relate, and with whom I meet on a regular basis.  The Commission, although established by government, and although responsive to those two ministries,and indeed receiving our funding from those ministries, is seen as being at arms-length from government.

And the idea is that there may be times when we will give advice and we will give it publicly, but advice which would be uncomfortable to government.  And again I like to think that one of the reasons for my appointment is that I am seen as being someone who is prepared to sometimes say some of the things that might be uncomfortable for government to hear.

There has been at the heart, if you like, our mission — and it was very clear to us when we were first established — that it was important for the Commission to engage the public in debate, and it was felt that there was insufficient quality debate on these subjects.

And the way in which debate had been conducted was really at a very sort of slight level, often rather hysterical.  So the challenge to us was to have a public debate, and the difficulty then of course is all of the difficulties that you yourselves know about,which is that in order to do that it is very time consuming, and it can be very demanding on the Commissioner. But we are anxious to take up the challenge.

It is often the case that those who will participate are people who already have a degree of knowledge and learning on the subject, or whose families have already got a reason to be interested in genetic issues, because there might be persons with genetic traits in the family.

But we were trying to get the debate beyond interest groups, and to reach a wider public, and I think to some extent that we are having some success on that. 

What we do is that we now hold our meetings rather as you do, and we learn — here we have certainly learned from the United States in that, as you know, we did not have a Freedom of Information Act like you have until very recently, and all the debate about the creation of a Freedom of Information Act meant discussion about how much more public government meetings and so on should be. 

So we decided to hold all of our meetings as you do in public, to have available the minutes of the meeting on the website, and to have the agenda on the website, and to as much as possible do everything in the open.

And that has been an experiment in Britain, and it is not how things normally are conducted in Britain.  We have a culture of secrecy about most things, and so this has been an almost revolutionary process in the public domain.

We take the meetings all around the country, and that is much easier in Britain than it is here in the United States, but we have held our meetings in Scotland, and in Northern Ireland, in Manchester, in Bristol.

We have taken the meetings up around the country, and the idea is that people have the opportunity of coming, of listening, of seeing what the issues are, and watching the nature of the debate, and how it is conducted.

We also have opportunities of particular events happening, where we invite, for example, younger people, people who are students, and high school people, to meetings so that their views are also part of our consultations.

We have recently established something that we call a consultative panel, and the reason for this was that we felt that we wanted to draw in the interest groups in a much more productive dialogue with the Commission.

There had been an original complaint when the Commission was established that interest groups were not represented sufficiently on the Commission.  There are a number of people on the Commission who, in fact, in their families do have genetic traits by the way, and there is one member of the group who is on the Council of the Genetic Interest Group.

But it was felt that that was insufficient by many of the groups. And even within the Genetic Interest Group in Britain there are, if you like, dissenters, and disagreements on some of these matters.

And it was felt that those disagreements and different views should be represented.  Well, we felt that to turn the Commission into an organization or into a committee which was representative rather than in which you drew together expertise was not going to be very useful, and could become impossible because it would have to become so large.

The Commission at the moment is 16 strong, and the only representation as such that we have on it is from the involved nations, so that we have a member of the Scottish Health Ministry, the Welsh, and the Irish, and so there we do require representation.

But apart from that we have sought to retain as a body of expertise and of interest, but not representational.  And so the consultative panel draws in, and we invited people to apply to come on to, and there are 110 people on this consultative panel.

They interact with us by way of e-mail, and also we have just recently had a big meeting to which they were all invited, and which their expenses were paid for.  So it is a way of engaging a bigger group.

But again not as a part of the internal commission, but to draw on their interests and concerns, and to make sure that we are really tapping into those who have a knowledge somewhat and what their concerns are.

I think the setting up of the Commission was in many ways quite a courageous move by government, and I think that they do feel that it has been very positive, which isn't to say that there have not been areas where they have been sensitive to the ways in which we would want government to proceed.

The first issue that affected us was an issue concerning insurance, and this was or this related to whether or not there should be a moratorium in relation to the use of genetic tests by insurance companies. 

Previous committees had looked at this, and sort of in some ways we felt had perhaps dodged the ultimate issue, and sought to find other ways of dealing with it, saying that perhaps they could only use tests which had been passed by a particular committee.

And so by the time that we were established only one test had been passed, and that was the test in relation to Huntington's Disease.  But there was a great deal of public distrust about that formulation.

There was a sense in which they felt that although this had been agreed by the insurance industry, that there certainly was evidence to suggest that it was not being followed by all parties of the industry. 

It became known that a particular large insurance company was indeed using the BRCA-1 test in relation to breast cancer, and we were very concerned that if something was not done very quickly on the area of insurance that public distrust was going to grow. 

And so in an initial polling, we found that this was one of the things that was spoken of, and almost at the time of the list by members of the public, and worry that insurance companies were stacking premiums against members of the public when using genetic tests.

And this was somehow an area out of — that was going to be out of control.  So, I had meetings, and the Commission had meetings with the Association of British Insurers, and I think that was with a great deal of encouragement and a report which indicated that we would in the end have to be minded to ask government to legislate for a moratorium. And insurance industry agreed on a voluntary moratorium for five years.

And the moratorium is that they will not use genetic tests, saving policies over a certain limit, and that is set high, at half-a-million pounds life insurance.  They can use genetic tests then.

Critical illness insurance, over 300,000 pounds. But apart from that, genetic tests can't be used and will not be used on a voluntary and agreed moratorium for five years. 

And the preface of that was to give time to look at the implications of this in terms of social policy, and public policy.  And to look at whether, for example, would premiums increase the board if it were not possible for insurance companies to use such information.

And to look at the arguments, which are that in any event genetic information is used by insurance companies already, and given that family histories are taken.  But for Britain there are special questions, and perhaps rather different from those affecting you here.

But they relate to the reforming of the welfare state, because given the way in which our societies are changing, and with the age frame changing, and with people living longer lives, and there being more older people and fewer babies being born, and so on, there are real issues for the British welfare state.

And there is a ruling back of the welfare state and we are seeing it on a number of different fronts.  And what is anticipated is that people will be making more and more, and taking control of their arrangements for their old age. 

And in doing so the insurance world will have a much greater role to play.  And so in those circumstances, should or should not genetic tests be used by the insurance industry.

So those are matters which we really have to engage with the Treasury that was going to be involved, and the whole question of our economic arrangements, financial industries, and so on.  And so there are serious big picture issues here which we felt that we needed time to look at, rather than rushing to either abandoning, or, if you like, a permission.

And so we want to properly debate about it, so that the public are well aware of what the long term consequences of any decision might be.  So the moratorium was one of the first things that we were involved with.

The other issue that we took on immediately was as a result of consultation and it was about privacy.  And we published in May of this year a report called Inside Information, which I hope that you received.  And this is a report on personal genetic information, and we put a lot of time into this report because the public had expressed their fears that genetic information could go into the hands of people that they wouldn't want their genetic information to be received by.

And we felt that this was very important, because it was interesting, and that in consulting with the public, we had a big consultation exercise at the beginning of this work on privacy. 

And the public on the one hand are very excited by the possibilities of genetic finds providing perhaps wonderful cures for disease, and therapies which will alleviate or ameliorate disease.

They see the benefits in a very real way, but as against that they are very fearful of what the consequences would be of their information, as I said, getting in the wrong hands.

They are very suspicious of government, and of the corporate world.  They are very worried about the ways in which they feel they would be disadvantaged or discriminated against if information were to reach into areas where they would not want it to reach. 

So it was actually showed that on the one hand

— I mean, it was very interesting and somewhat  contradictory.  On the one hand, 9 out of 10 people were saying, "wonderful," that genetic science is making these great developments, and that we want cures for disease, and we want all the good stuff.

And at the same time, and in amongst those same people, there were a third who said that in fact human genetics was tampering with nature, and that it was unethical, and that they felt that it really in some ways affronted some of their deepest beliefs.

Three-quarters of people, of the people that were consulted, felt that they had too little information or controls were in existence, and that they had little or no confidence that the rules and regulations which did exist were keeping pace with developments.

So it was on that basis that we really did have a look at how we would deal with the issues of privacy, and how we would create much harder — you know, much more solid walls around medical information. 

The other issue for us was that in Britain that we are embarking on a very important research project called BioBank.  It is a project combining the Medical Research Council and the Wellcome Foundation.  And the idea is that some half-a-million people across the country and around the country will be invited to take part in this research project, and to give samples, which will be anonymized.

And it is a very important research project because of course it is about the epidemiology of disease, and to combine it with genetic knowledge.

And in order to encourage people to participate in that, we have to make sure that we address their concerns about privacy.

And at the very same time, and within the National Health Service, we have and we are embarking on an upping of the use of technology, and there are going to be much more, if you like, developed systems for retaining information on patients, and on the patient's body.

And indeed the National Health Service's medical records are of great use to people all over the world.  I mean, many researchers here in the United States go to Britain to do epidemiological research because we have got it over there very nicely, neatly, and tidily in our medical records.

And these will be more easily accessible once they are computerized in a very coherent way.  So the fear is that that sensible use of technology and the keeping of medical records in many ways makes the individual or the citizen more vulnerable.

So how do we deal with that issue? And we really have tried to formulate some sensible proposals to government about the tightening of those restrictions, and we have made recommendations about the creation of a criminal offense for anybody who would make sure of genetic information with either obtaining genetic medical information by deception, or without proper consents.

Now, I want to deal with some of our reasoning for that, and that I think that we were very conscious of a case that had taken place in Scotland, which is where I hail from, and there had been a case involving a man who had AIDS, and transmitting the disease to a woman through sexual intercourse. 

And having been asked by her on what his position was on basically not revealing the fact that he was a sufferer. And he was prosecuted criminally, criminal prosecution. And the way that he was establishing that he was someone who had been HIV positive was through an anonymized research project which had taken place in prison, while he had been in prison for another offense. 

And he had taken part in the research program on the understanding that it was going to be anonymized.  His anonymity was decoded and it was by that process that it was possible to bring the prosecution against him.

That case was Regina versus Kelly, which was not appealed, and so it is still the first instance of a High Court case in Scotland. It did, though, set up alarm bells about the way in which in certain circumstances though could be a decoding, a de-encripting of even anonymized research.

And so different interest groups expressed concern that anyone taking part in research might actually make themselves vulnerable to all sorts of other possibilities.

So we then looked at that issue of wrongfully, and without proper consent, making use of genetic information.  We also looked at what we saw as being real risks that people might want to access the genetic information of public figures. 

Politicians, and people in the public limelight, wanting to show whether they had indeed fathered a child or not fathered a child, and whether in fact they may be people who were carrying a particular genetic trait.

And if someone thought that a senior politician was someone who carried a trait for some sort of something, like Huntington's, that maybe people when that person was still 30 might want to preclude them from taking part in public life.  I mean, one can imagine different circumstances.

Now, those are the ones that are rare and unusual, but a much  more obvious one is one that I think you are familiar with here in the United States, which is that people would take a sample from a child in order to prove that the assumed father is not indeed the father.

And what concerns us in Britain is that that can be hugely damaging to the child, and we are looking at this from the point of view of the well-being and the welfare of the child.

That while it is right that a father should be able to establish whether indeed he is the father or not of a child, that should be done through the proper processes, through legal processes through either agreements through lawyers, obtaining proper consents, and applying through the courts. 

But not in ways which could be inimical to the interests of a child, especially if it was thrown into the child's face or the mother's face in the presence of a child, and the long term consequences of that for a family.

Because one has to remember that it isn't just a father who might do that.  It could be an interested mother-in-law, or a relative who has suspicions about a child, and whether indeed the person who claims to be the father is the father. 

And I think that our concerns were that this has to be managed properly and that it may be that one would have to look at the creation of a criminal offense for obtaining genetic information by deception, or without proper consents.

The other thing that we felt may be required would be to create even greater obligations on medical practitioner and those associated with medical care, and their responsibilities and duties may have to also be regulated in some stricter way.

Now, the question that you may all ask is, "well, is genetic information really so different from other medical information?" And I think that we could probably answer the question by saying that it is not considerably different, but there is something different about it, in that it does have a much greater impact, and a clearer impact on others within the family or others that are related.  The other thing is that the perception of the public isn't as different, and I do think that we can not be dismissive of public perceptions.

So we have been involved, and have completed that report, and we have established a number of principles around the privacy of individuals, and I think it is all there in the report which I sent through to you.

The issue that we are now dealing with is the one of — and we have been asked to do this by government, is to look at over-the-counter testing.  And one of the reasons for looking at this is because it already is beginning to happen in Britain. 

I know that it is probably much more familiar to all of you, and what we have been having a public consultation on, and at the moment being assessed, and the issue here is again around whether or not there should be a difference between some tests being available over the counter, as distinct from perhaps more serious tests.

Where we would really go would be counseling, and we would want, if you like, a medical intermediation so that people can really understand what a test is telling them.

Our fear is that some people will be overly concerned by results from a test, and read them in a much more worrying way. Or in fact they have been given a clean bill of health, when in fact there are matters which should be understood and be more concerning than what might first appear.

And so we feel that there are different kinds of information and what we are looking at is whether some of them should be only available through medical practitioners and not just available over the counter.  But again it is an issue of the market, and a sense in which why should members of the public, and not themselves, be the determinants of what tests they want to take part in.

And they are well-enough informed, and surely they should be the people making decisions.  So those are the issues affecting us just now in relation to this current issue, and we will be advising government by the end of the year. 

The piece of work that we are then looking at is a very major area, and it is about reproductive choice in genetics, and Suzi Leather will go on to deal with this under the banner of her own committee's work. 

We are really looking at the ethical issues connected with ways in which people could make use of genetic testing to enhance their children, or making choices as to gender, for example.

And those are the ones where we really do feel that there should be real public debate, and a sense of the public's concerns.  We do think that there is a shift taking place. 

A number of years ago, I think some research — and Ms. Leather will deal with this — that there was some research that the public, that there was a real unwillingness for people to be able to make choices even on gender.

However, that somehow has been ameliorated over a number of cases recently, where people who already have a family of say, sons, might want to have a daughter, and in small polling, it seems that there has been something of a shift in that area.

But this is the big one that we will be looking at over the next 12 months.  So that really is the work of our Commission.  I am very happy to answer questions from your Committee on our work, and I hope that this might be the beginning of a greater collaboration between our two countries on these very important issues. 

CHAIRMAN KASS:  Thank you very much.  Why don't I simply open the floor for discussion and hold my own questions back.  Frank, Frank Fukuyama.

PROF. FUKUYAMA:  Well, Baroness Kennedy, thank you very much.  We really appreciate your coming to speak to us.  You know, I teach a course, and it is a basic graduate — introductory graduate level course— in comparative politics, a lot of which is why the

United States is so different from Europe.

And it seems to me that this is a perfect illustration. And one of the areas in which there is a consistent difference is in interest groups, or the nature of interest groups, so that you tend to have peak associations in Europe, and interest groups are organized, much more organized than they are here.  And I was thinking about that insurance case that you were talking about, and whether it would be even conceivable to do something like that in this country, where you could get a voluntary agreement on the part of a large sector on the basis — I mean, I am trying to imagine.

Let's say that our council decided that you needed similar rules or restraint on the part of the American insurance industry, and Leon was to pick up the phone. 

Who would he call, and what would be the interlocutor on the other side that will allow you to suggest that in lieu of actual regulation, or legislation, that they consider adopting this kind of a voluntary ban.

And I think that if you try to imagine that as an American happening, you just realize why our system is so completely different.  But I just wanted to ask you a little bit more about that particular case. 

You don't have any regulatory power to enforce a ban.  So, first of all, who do you talk — who is your interlocutor on the side of the insurance industry, and did this depend on a kind of implicit threat of regulation by Parliament if they didn't, and if so, how explicit was that? Or was this just one of these things that can happen in Europe, and in Japan, where there is enough deference to the authority of government that this comes about?

BARONESS KENNEDY:  It is almost like giving away one's advocacy secrets if you are a barrister in the courts, and you are always somewhat unwilling to do that. 

But the truth is that I met with the Association of British Industry, which has a body representing by and large the whole of industry.  I mean, there are pockets of the industry which don't belong, and they were or would be described as carpetbaggers.  But by and large the industry does join together under the banner of the association.

And I think that our insurance industry is feeling a little bit beleaguered at the moment, with a number of scandals on life insurance and so on.  So I think that there is a willingness to have — you know, there is a real feel that they have to win back public confidence. 

So that was one of the good bits of the picture which I was able to, if you like, draw on, is that here was a way of the insurance industry showing that actually it was more concerned with the public good.

But I can't pretend that I didn't hold toes to the fire, and the way of doing that was to say in the end that I will be advising legislation, because if you don't do it on a voluntary basis, time has to be bought because we are in the process of reforming the welfare state, and until we have a sight of just what is on the horizon, you may find that legislation is could be much worse and more much detrimental to you.  So this is the best way of at least holding, or not to say in the past, but holding on to some possibilities for you.

So at the moment we have — we have persuaded them that it was in their own interests to do this.  So rather than a deference to government, you know, passively, it was really because it was seen that government just now needed time in its development of its reform agenda.

CHAIRMAN KASS:  Paul McHugh and then Michael.

DR. MCHUGH:  I also want to thank you very much for coming and telling us about your enterprises and your travails and I wanted to pick up an issue that you mentioned, and would like to hear you develop it. You said that the issue of genetic information, particularly in the insurance arena, was seen by the public as different than the ordinary information that the insurance companies do take.

I presume in Britain that they measure people's blood pressure and they take a urine sample, and things of that sort, and if the urine has sugar in it, and the blood pressure is about 140. they alter their plans.  Is that correct, first of all?

BARONESS KENNEDY:  Well, that is correct, but more.  The insurance industry in Britain, and I am sure or I am assuming that it is the same here, but it may not be, will also ask what did your father die of, and what did your grandfather die of, and what did your mother die of. 

And is there any illness in the family, and has anybody had cancer and so on, and the profile that is created is really giving genetic information in any event.

DR. MCHUGH:  Yes, that's right, and so this issue of public perception about genetic information is the crucial matter, and through your wonderful means of persuasion and pressure, you have produced a period of voluntary moratorium, and you chose five years.

I wanted to know two questions.  Why five years, and what is actually happening during this moratorium to either enlarge the public's understanding of this issue, the place of genetic information and how it can be perceived inaccurately by the measures that are now being used, and more accurately, and perhaps more benignly, and in more direct ways, and also in the opposite direction.

Why five years, and what is going on during the moratorium?

BARONESS KENNEDY:  Five years was really only chosen because we felt that anything less than that was probably too short in terms of devising policies on welfare reform.

And also because we felt that within five years that we may have a better sense of the tests which are really going to make a difference, because as you would all know, the majority of genetic tests are multifactorial, and therefore to read anything very predictive from them is going to be difficult in any event. 

So we felt that within five years that we should have a fairly good idea of whether this effort was going to be solid, as distinct from a bit more amorphous. 

We felt that gave some time for the insurance industry, along with us, to have much more public debate about those very things that you are talking about.  The public at the moment seemed to feel that genetic tests are very different.

And what one wanted to do was to have more discussion about that and more debate, and to some extent I have been encouraging the insurance industry itself to take a lead on this.

I have been saying to them that you, too, should be doing research, and it should not all be left to government.  And I am afraid that has been more of a tendency in Britain.

That when it comes to research and things like that, that it is then government, and government bodies, and academic bodies that should do it.  So I have been saying to the insurance industry that you must conduct your own research and so why it is in fact in the public's interest for this, and that it will be more expensive to the public as a whole.

That there are other ways in which you could meet if you like the needs of this small number comparatively of people who may have single cell diseases and so on.

And that there are devices and ways that you could deal with that, but you have to be creative, and you must come up with some ideas, and don't leave it all to us.

And so the five years is not seen as just being a sort of time for government to think.  It is also a time for the insurance industry to get its act together, and to learn advocacy skills itself about what its purpose is.

DR. MCHUGH:  I think that is wonderful, but how are they doing it?  Are they waking up to their responsibilities even if driven by corporate interests?

BARONESS KENNEDY:  Well, it is interesting that I have met with — you know, we have a body of actuaries and they, for example, are doing a great deal of work that they think will support and help the insurance industry in this.

Also, people are coming up with schemes which are to prevent discrimination, and to help if you like either by having — I mean, to have the government create a safety net for the few, or the insurance industry itself creating if you like a safety net for those who would be in that small category of single cell diseases.

And it is also a question of whether genetic tests might not be, or even genetic histories, might not be used in some areas at all.  And so they are looking at the products that they could create which could deal with some of these issues.

And at the moment, I think that there has been a lot of anxiety that there might be a complete ban, as there is in some parts of Europe.  So I think there is some creative thinking going on.

CHAIRMAN KASS:  Michael Sandel and then Dan.

DR. FOSTER:  As you have hinted, there are or is genetic information just from history about the genetic type of the family that may give you some hint about the genotype there, and that is always going to be available.

But if one looks to the future — I mean, that seems very reasonable for the insurance companies to have, but if in fact genetic testing moves much further along, and I don't know whether this is going to ever happen or not, but at least in principle — people are talking about because of the availability of DNA arrays and so forth, that might one in some sense develop a whole genetic history of an individual person.

And in a small country, you can get extremely valuable information.  The question I want to ask is if you have given any thought to the encryption problem, in terms of hiding genetic information.  As far as I can tell from reading, the Icelandic experience is the prototype here. 

And everyone who has looked at this thinks that it is really as secure as anything could be.  And there is powerful new information coming about. For example — and I don't know whether it is true or not — but I mean there are ideas that you have the suspect genes for schizophrenia and so forth that vary a little bit from workers in this country that I know.

I mean, most gains in Iceland seem to be a little different from the schizophrenic or depressant genes that are being isolated here.  So I guess the question is that it seems to me that that sort of pervasive genetic information, if it ever comes about, would be much more critical to protect than measuring a Breast Cancer-1 gene or something like that or a Huntington gene.

Because it would have potential implications even for polygenic illnesses if you looked at that.  Now, I don't know if there are going to be enough computational biologists to ever do this. 

I mean, the greatest shortage in science right now is computational biologists that know how to assess all the genetic changes, and it is a specialty that is very narrow, and very sophisticated, and it may not be available.

But the bottom line question is, is your Commission beginning to think about how this genetic information might be encrypted, and would you in your own mind consider the Icelandic model as something that you might follow? 

I realize that in a large country like your own, compared to Iceland, that may not be applicable. 

BARONESS KENNEDY:  Certainly that is one of the things that we have put on a list as being an area that we would like to look at, and we are very conscious of the problems surrounding encryption, and at the moment we certainly have not embarked on any work.  The resourcing of our Commission makes that difficult.

It is an area of concern for us though when we actually look at and consider what we think are ethical issues on the horizon.  We certainly think that those are the ones that are going to be particularly difficult, the ones around things like mental illness or the trait or potential for mental illness, and behavioral traits from what has just been done by the Nuffield Foundation on Bioethics, which is a very good piece of work which I would recommend to you, and which I am sure other people have done work on in this country.

And it is a matter of concern to us also in the area of crime detection, because we perceive a possibility that it could be, for example, made use of in that area, too. 

So it is certainly something that we have on the horizon as an issue that we would want to engage with, but at the moment, we have done no work on it at all, and the only people that have been the Nuffield Foundation. 

But I didn't mention, and let me do so before I forget, but one of the areas that does concern us is the use of DNA in crime prevention.  This is an area where the general public are very enthusiastic about genetic purposes and uses. 

They feel that if it can be used to catch criminals, then terrific.  Given the enthusiasm, our government has gone much further than any other government, in that we passed legislation a year ago which allows for the retention of DNA samples, even of those who are acquitted of crimes, so that it remains on the databases, and in the databank, even when someone is acquitted.  But even more interesting, is that we in Britain conduct intelligence screens, where, for example, if a child were killed in a village, all the men in the village might be invited to give a genetic sample so that they can be eliminated from investigations.

And in Britain, and I know that it doesn't happen in the same way here, but in Britain people will all step forward and participate voluntarily.  And now under the new legislation, they will sign a consent form. 

And their genetic tests will be kept forever on the database, too.  So we have, and we are expecting, that before long 1 in 15 people will be on the database, and most of them of course will be men.  So a high proportion of British men will be on the police database.

It has raised a very interesting debate in Britain, which is that if you are doing that, and a lot of people who are not convicted of crimes are on that database — and many of them because of their good will in volunteering samples for elimination purposes — there are two issues.

One is whether there is an informed consent, and if somebody actually volunteers and says, "take my sample, because I want to help the police, and I certainly don't want to be looked at suspiciously by refusing," is it an informed consent if it is given in the heat of an investigation.

The second thing is that people have been saying, "well, look, if you are taking all these samples in this way of anybody who is suspected or in any way is in the purview of a criminal investigation, why don't you just have a sample taken from everybody in the nation?" 

That is fairer than having only a percentage of people, some of whom have not committed a crime at all.  Otherwise, you create if you like an unevenness and the sense of an injustice on those who are in there, and their brother isn't, and yet they have never committed a crime.

And we are a rather passive, gentle nation it seems, because nobody has become particularly alarmed enough to make enough of an issue of this.  But it is very interesting, because as you know what happens with genetic samples taken for criminal investigation is that a bar code is created. 

And the bar code is made or is created in what I would call as being described as junk DNA, DNA that would not tell you anything about a medical history.  But the bar code is kept on a computer, and of course a bar code is taken for any sample found at the scene of a crime.

But when they take a sample from a suspect, or from anyone who takes part in an intelligence screen, the sample is also kept.  And the sample is kept in the freezer somewhere. 

I argued, because I am involved in Parliament, and that I am a member of the House of Lords, and I argued at the time that this really had serious risks, and I didn't think that people were debating it enough.  That if you are keeping the samples, then what is the rationale for that? 

The rationale given by government was that the samples are kept in case the computer goes down, and your bar codes is somehow messed up.  And the answer given was that you sometimes on the bar code, you are getting — that it is not being made clear enough and you might want to go back and see the sample to make sure that the bar code has the clarity that is required.

Well, I think that it was disingenuous, and I think that the real reason is that they want to keep the samples because as science is developing in the way that as Dr. Foster was saying, is that, there may be uses to which the samples could be put.

If at the scene of a crime you find a sample, and you think that sample is suggesting that the person who committed the crime carries a trait for a Tay – Sachs, and is somebody with red hair, then you want to be able to go to your bank, your police bank, and look through it and see if there is anybody on the bank that fits that description.

The other risks, of course, that the public is going to see before very long is that if they have access to medical records, then any of us can then be looked at.

Now, the answer that is given by lots of people in the public is, "well, so what?  If you have got nothing to hide, why should you worry."  But of course any of us concerned with civil liberties know that there are risks in all of that.

But at the moment in Britain, I think we probably have a much more liberal regime than anywhere else in the world, in that we keep the samples and we keep the bar codes of not just convicted people, but people who have in any way been investigated or voluntarily participated, which is quite an extraordinary development, and one that I would be interested in hearing your views on, but I suspect that I can imagine them.  And I did come into it with the FBI here in the United States at one stage, and they thought this was extraordinary that this was happening in Britain, and they were in fact quite jealous, and said that in fact that they had had an experience once of a murder taking place in a hospital, and they had hoped to do an intelligence screen of all of the people who worked in the hospital, and they refused to take part. 

And it is very interesting, and I think it is divided into a different cultural experience, and that people in the United States are much more conscious of the potential for the invasion of privacy; whereas, people are much more I think accepting in Britain.

CHAIRMAN KASS:  Thank you.  Michael Sandel.

PROF. SANDEL:  Well, I would like to make an observation drawing on the comments and questions about your project on the use of genetic information by insurance companies, and then ask a question on a different topic.

We have not put on our agenda the question of the use of genetic information by industry or by insurance companies, though we have had some discussion, and our colleague, Mary Ann Glendon, who isn't here, has been a big advocate of including as a project the questions about the commercialization of the body and of genetic information, under which this topic would fall.

And I think the interest that you have sparked around the table in this question suggests that it may be something that we should discuss as a possible topic, and Paul McHugh suggests that maybe the public perception is inaccurate and should be dispelled.

But there is or there may be something to it worth investigating, because there is a very interesting philosophical question about the extent to which insurance as a social practice should pool risk, or individuate risk.

And obviously the companies have in their interests to use whatever device that they can to individuate and specify risk.  But there may be social interests in resisting certain extensions of the individuation of risk in the provision of insurance.

And that raises all sorts of interesting and important ethical and social questions that I think might make a worthwhile project for us to take up. 

So I think that you have prompted us or certainly me to think more about that, and I think based on the reaction around the table that others might find this of interest as well. 

I have a question on a different topic.  In the packet of information that was provided in connection with this session was the Human Reproductive Cloning Act of 2001, adopted in the U.K.

And this was the law that banned reproductive cloning in the U.K., and I was struck by the simplicity of the legislation, which says very simply that, "A person who places in a woman a human embryo which has been created otherwise than by fertilisation is guilty of an offense." 

So in one sentence, the law. And the reason that it struck me is that here we have had endless, endless debates because there is widespread consensus in this Council and in the U.S. Congress to ban reproductive cloning, just as you have done.

But what has prevented its happening is a concern, is an objection, that to ban reproductive cloning by law would somehow implicitly permit or endorse a much more controversial practice, namely the use of cloning techniques for biomedical research.

And the argument has been raised in this country that we couldn't possibly ban reproductive cloning simply as you have done with this one sentence law, because that would — to pass such a law would implicitly sanction, or permit, or endorse, cloning for biomedical research.  Was that objection raised in Britain?

BARONESS KENNEDY:  Yes.  But really you have got to remember that this is set against a history, and that one sentence bill was the culmination of many debates, and we had already agreed in Britain — I mean, it goes all the way back to the Warnock Report which I thought one of your colleagues had.

And when we had originally decided to legislate for in vitro fertilization, we started a process, and in that process we created the authority which Suzi had, which is a regulation authority. 

So we have already gone down the road of regulation, and we are well down it.  I mean, you know, we are over 10 years now there.  And having done that, we have had many debates along that road.

And we have a big set of debates about, should the authority be able to allow for research in the area of therapeutic cloning, and we had that debate that you are talking about in relation to that.

So that before we ever got to the creating of that act of Parliament which you have just read out, which banned human cloning, we already had had a huge debate in Parliament over whether the Human Fertilization and Embryology Authority should be allowed to authorize this kind of research, because it is the regulatory body which has that within it some control.

And there were many people who felt that this was a step too far, and others who took a different view.  And of course you have got to remember that in our Upper House you even have the Church represented, in that you have the Bishops there, and it was very interesting hearing the arguments placed by, for example, the Anglican church.

But there were great reservations by many people, but at the end it was felt that in the — if you like, that in the balance of benefits and losses, of rights and wrongs, that society — that the benefit that could come to society, in terms of ameliorating disease, and the pain and wretchedness of that, that if the research was restricted only to research which was directed towards serious disease, then it would be allowed.

But only in those very strict circumstances, and so that debate had taken place, and really this bill was because some people said, "Okay, we have given that, but we haven't anywhere ever said that as a people we are abhorred by the idea of cloning, of human cloning, and we want that declaratory function of legislation to be present somewhere."

And that's why that bill came into being.  It was really a declaration to the world that we are against human cloning, rather than really starting an approach as an engagement on the issue of cloning.

We had been through all of those debates, and we had allowed for very restricted research to take place, and that had all been passed through Parliament.

And so then the final question was, "Don't we need to have something that says in a declaratory fashion that human cloning is abhorrent?"

PROF. SANDEL:  So that what happened was that there was a separate debate, if I understand you, a separate debate on the highly contested issue of cloning for biomedical research, which ended in permitting it under some very special circumstances, subject to regulation and so on.

But having had that debate as a separate debate enabled you to pass this law.


PROF. SANDEL:  And when this law came up in Parliament were there those who opposed it because they disagreed with the outcome of the other?



BARONESS KENNEDY:  It passed through Parliament  with great ease, because there was a general consensus that human cloning was unacceptable. 

PROF. SANDEL:  And everyone accepted the distinction between these two separate issues?


PROF. SANDEL:  Thank you.

DR. GÓMEZ-LOBO:  Can I raise a question?  But the other one is human cloning as well.  So what you are really talking about are the intentions of the researchers when they clone, right?

BARONESS KENNEDY:  Yes, but I would like for you to address those questions to Suzi Leather, because I think that she would — and not because the Commission shirks them, but because we actually do see a very clear distinction between the creation of embryos in those lay moments of creation, which we feel as being different from the situation of implanting them into a woman so that they actually do grow into human form, and that is the difference.

There is no way that we feel that you can ever meet the profound beliefs of those that feel that at the point of conception life is created, and that is sacrosanct.

And I think it is wrong to try to persuade people that they are wrong.  People believe that and should be allowed to believe that, and respected for their belief system. 

Then you have to say, you know, that there are also people who believe that that life does not have potential because it has not yet been implanted into the womb of a woman, because it is that process of growing in the womb of a woman that is going to determine this potential life into a real life.

Now, you can't meet those two, and we are talking about theology, and you can't marry up those two arguments.  And we can sit and debate them forever.        

You have to at the end of the day see whether you think that those are — you have to make an argument about your morality, and at the end in Britain, the general feeling was that the morality that says alleviating the pain and misery of so many people who have disease is such an important good for society that in very restricted circumstances, if you like, the thing that people might see as not so good, of having research on cloned embryos is if you like, a wrong that somehow has less moral horror because of the good that will come of it.

And that is a balancing act and a decision that people have to make, and some people will never find it as being something that can be reconciled for them.  And our society has chosen a particular way and your society may choose in another way.

And there really seems to me to be — there has to be a recognition that at some point that you make your choice. 

DR. GÓMEZ-LOBO:  Of course, this is a very big debate and I have always been very happy to embark on it, but let me make just one little point.  I don't —

BARONESS KENNEDY:  We could talk about it forever, and so — I mean —

DR. GÓMEZ-LOBO:  Well, I don't know about forever.  One little point I want to make at this time is that that is not what I make or what I hold, or as people hold – not a theological statement. 

The debate in my opinion should be conducted on the basis of embryology.  I think the 14 days is a much more magical and theological date than anything else.  But we will proceed.

CHAIRMAN KASS:  Actually, I put myself on the queue and it follows up on this discussion, and I want to abstract from the question about the embryo, and to make the more general question about — I mean, the commission is more than an ethics commission and has other responsibilities.

But insofar as you do advise on ethical grounds, on which moral considerations play a part, how do you actually go about that? And in particular in this regard: in passing you said there seems to be a shift in where the public is, for example, on the use of new technologies for sex selection.

And that led me to wonder whether or not the Commission regards itself as finding out where public opinion is on the ethical questions, and enshrining it.

Or does the Commission — and I will just sort of make the extreme opposite – that the Commission regards itself as the teacher of the public on these matters, after having listened to the various kinds of arguments?

In other words, is the answer to the ethical question, to put it in a vulgar way, with apologies, to do focus groups, and to do polling, or is there deliberation amongst yourselves on the basis of them?

And then the second question would be on the basis of what kinds of principles or notions.

Would you then make recommendations to the public and to the Ministry, that the public feels strongly about this in this way, or they are divided, but we think that the wisest course, or the most ethical course, the prudent course, is this?

It's meant to be a general question to just sort of flesh out the kind of ethical deliberation.

PROF. MEILAENDER:  Leon, before she answers, may I just tag on to your question, and come off the queue, because this is what I was going to ask about, and I just wanted to add one thing to your question.


PROF. MEILAENDER:  He had — and I had noted also what you had said on the sex selection thing about changing public opinion, and raised the question he had, but you seemed to take sort of a different angle on the information you gave us about the use of genetic information in criminal investigations, and the storing of it and so forth.

And at least when I listened to you the tone seemed to be that the public might be a little too accepting of this, and somebody needed to buck them up a bit to be less accepting. 

So in the one case, it seemed a little more as if you were going to kind of learn from the public, in the case that Leon mentioned, and in the other case, it appeared more as if you wanted to, as it were, to shape the public.

And so it is just another part of what you said that would relate to his question about how you understand your relation to that larger public opinion. 

BARONESS KENNEDY:  I think that when you are involved in a process like this, it is a two-step.  You are having to listen to the public, but you are also having to lead, and to deny the role of leading I think is really one of the things that in society that we are too ready to do now, the absence of leadership on these sorts of issues.

And so I don't think that polling is a very acceptable way to test public opinion, because on the whole the quality of the debate that is taking place is not likely to give you very sensible answers.

Sometimes when people actually hear the full argument, it is a bit like the business on insurance.  They realize that the thing is much more complicated and interesting than they thought it was.

The first instance is to say that we want a ban on genetic tests by insurers, but once you explain that it is more complicated than that, then people start shifting their position. 

And I think when you are talking about ethics, you need leadership, and I think that is what the role of governments is.  We can only advise government.  We aren't the deciders of ethics, and my Commission is not pretending to have the wisdom that others who actually in the end should make the decisions in this.

All we can do is advise, but we do have proper and real debate.  We have a number of ethicists.  We have our churchmen, and we have a sort of secular ethicist on the Commission.

And we are very mindful of how important these issues are to people.  But it is Parliament.  The debate on this sort of thing has to take place in Parliament, and it is one of the reasons why I feel very strongly that my Commission is an advisory body only, and not a regulatory body.

We are not like Suzi's authority, and we don't do that. We advise.  Government can accept or reject our advice.  Government is answerable to the people.  So whenever they give a leadership steer, if the people in the end don't like it, there is a route that people can take.

But I do think that governments should lead when it comes to these difficult issues, because governments have the opportunity of taking part in complex discussion, and in a way perhaps that the ordinary citizen going about their daily round doesn't have a lot of time for.

They have a gut response, but if you give them more time and more information, maybe they can come to good decisions, too.  But you do need leadership.  Now, let me just go back to the two issues where you think there is an inconsistency.

One is on sex selection for children.  The public again — and when I say there might be a slight shift on that, it is only because the public will say, "well, surely if two people are having a family, and they have a number of boys, and they decide that they want to have a girl, why shouldn't they be able to do that if there is a way you can do it."

But when you explain to them what it would involve in vitro fertilization, and that it would involve PGD, and the dangers and risks that are involved in all of that, the majority of people would say, "Well, I mean, who could be bothered?" Who is going to take the risks and who wants to do that?  Aren't we happy to have children at all?  So the reality is that unless it is a simple process, people are not going to do it.

And it is when you explain to people what would be involved, suddenly people realize that in fact it is not around the corner, and not something that they themselves would be begging to do and that the old – fashioned business of having sex is actually fun, and the way that most people would prefer to go about their business.  So I don't think that it is about taking a temperature gauge in the first instance, and then having a full and open discussion where people are given information.

Now, the temperature gauge is, at the moment I think, that people are saying, "Well, why shouldn't that be possible?"  And once you give them more full information about what is involved, they say, "Who wants to be doing that?" and, "Is this a proper process?"

And I think they retreat from it with more information, and so I don't see an inconsistency in my position.  I think that actually people come to these complex and difficult areas usually with a gut response, which is not to be ignored, but once they have more information, they often shift their ground.

And I think that what happened in Britain was because we had been having a long term debate over in vitro fertilization, over how it should be used, over whether the circumstances in which permissions might be given with each new advance to clinics or research bodies for what they were doing, we became used to that process.

And then when the very profound challenge is made, do you allow research on an embryo that is not going to be implanted into a womb, that was a very important moment for the British public.  And there was very considerable debate.

And church people, and people with very real religious convictions made clear their position.  Many others — and in fact I would say that the majority of church-going people in Britain actually in the end came down saying that the terrible horror of people suffering terrible diseases is something that we should seek to find ways to alleviate.

And if some research can make that possible, although we have inhibitions about it, and we don't feel that it is just something that people should do in a cavalier way, we think it should be allowed in very restricted circumstances because of the good that could come from it.

And I think that was a very tough debate, and it took place in a way that in the end the majority of people in Britain feel comfortable with. 

So a lead was given, and I think there is no doubt that Tony Blair himself took a lead, and he is recognized as someone with very real religious conviction, but he gave a lead on it.

And I think that is what political leaders should do, one way or the other.

CHAIRMAN KASS:  Charles.  Charles Krauthammer.

DR. KRAUTHAMMER:  Yes, I would like to echo Michael Sandel's noting the interest that you have sparked on the council by your discussion of the question of the use of genetic information by insurance companies, which had not been raised here, but has actually sparked a lot of interest because it raises a lot of extremely interesting issues.

And so I wanted to just engage you for a moment on the substance of it, as opposed to the mechanism and the regulation.  I can imagine that there would be two reasons to want to ban the use of that information or that procedure on the grounds of privacy, and the other on the grounds of fairness.

Privacy obviously, you don't want that information ever to get out, and so you may not want to require it in the first place, because you may not be able to have absolutely a hundred percent reliable safeguards.

That I think is an easy issue.  The other one I find a little more intriguing.  Was the rationale because of the privacy, or was it because of the equity or unfairness?

I could imagine that the argument might be that people don't feel that they ought to be penalized by being denied insurance, or subjected to exorbitant rates on the grounds of having some kind of hidden illness discovered by genetics.

What I am curious about is why you would say that you can't use that or you would be violating a principle of equity.  By using genetic information, and in a circumstance where I suspect by giving an ordinary blood test, then you could look, for example, in SGOD, SGTPSs, and discover hidden liver disease.

And it also may not be obvious to a patient.  So on what grounds did your council decide that this information ought to be not used in the moratorium being imposed?

Was it the privacy issue or the equity issue, and if it was the equity issue, how did you distinguish genetic information from otherwise obtainable medical information – older medical information?

BARONESS KENNEDY:  In truth, it was about both.  It was both privacy and equity, and in fact there was a very strong argument that came across from some quarters, which was that in fact an unfairness would take place for people — and let's take as an example people with the Huntington's situation, and who may have a positive test that says that they do not carry Huntington's.

But on the family history, they would not have difficulty getting insurance at all, and those people feel that they would be discriminated against, and that they couldn't use the positive test to come to an insurer and say, "Look, despite the history in my family, I am not a carrier and I want to have insurance."

And not surprisingly the insurance industry would say, "There is a moratorium as to work across the board," although at the moment most big companies are saying, "If you come to us and you show us that you have a test, we will work it in your favor," again answering this thing of wanting to show the public that they are interested in the public good.

But at the moment we felt that there were a number of pressing enough issues that meant that the moratorium would give time to explore them, and not because we felt that we had answered the question of wasn't there a lack of equity in the circumstance that you are describing.

But we decided that we wanted some more time for people to have that debate rather than to instinctively opt for a banning, or for a just across the board use of tests.

So we really came at it very quickly, and it was one of the first things that the Commission did.  We did it within a period of really five months of being in existence, and we didn't go into a great deal of detail about the way in which there could be inequities as you have described.

DR. KRAUTHAMMER:  But I am puzzled as to why one would conclude that the use of genetic information to discover a hidden condition is inequitable, but we accept the use of other medical information, like liver function tests also to obtain information of hidden conditions.

But obtaining that information and using it in deciding to give or to deny insurance is acceptable.  How does the genetic information differ from the traditional other medical information which is obtained from normal medical testing?

BARONESS KENNEDY:  Well, I thought that was the tests that I had made earlier on, which is that there is no difference between some of the information you will get from a genetic test, and from the information that you will get from other tests or from a history.

The point was that in — and it is like all these things.  There was a trade-off.  We couldn't say to the insurance industry that you are not allowed to use even history or test at all during this period of the moratorium or we wouldn't have gotten the voluntariness that we wanted.

And we ourselves wanted to have more time to look at whether what the position of the Commission would be on the taking of history, or the use of other tests.

And we wanted also the public to become more aware of the ways in which all of that information would have to be taken out of the frame potentially if they insisted on their anxieties being privileged in relation to genetic information that you couldn't really draw a firm line between genetic information and other kinds of information.


So it was a trade-off.  We said, "Make your" — I mean, "Give your commitment that you will not use genetic tests, and we will allow you to carry on doing what you do already, using tests already in the public domain, and which are already part of your processing." 

That in a way gives comfort to the public because at the moment their lack of knowledge about the differences.  That also gives us time to look at where this is going. 

So it wasn't a pretense of being some kind of coherent position.  It was a trade-off.

CHAIRMAN KASS:  We are coming up on the break.  So, Bill Hurlbut, just briefly, and then we will break.

DR. HURLBUT:  My question relates to the fact that your country has a national health organization.  When I look at the possibilities implied by genetic sequencing and understanding each person having a profile and a database and so forth, I see a mixed reality.

For one thing there is a large misperception by the public concerning the determinism of genetics.  That obviously has to be ameliorated by education.  Nonetheless, even if it is just statistical probabilities, it seems like information either in the hands of physicians, or in the hands of individual patients, or in their minds, of course, could increase both — well, could decrease costs, and increase efficiency, and have overall benefits.

What I want to ask you is that there has been a long history of debate in this country and everywhere, I guess, about how much imposition a general society has over the individual. 

When you have a national health plan, you have a different situation, where you have a general interest in the individual's situation, and therefore more argument for imposing certain types of information on the individual.

To what extent are you debating currently the degree to which individuals should be informed, be it before marriage, or during some process before childbearing, concerning their genetic situations?

To give you a historic example in our country.  Linus Pauling at one point suggested that everybody carrying a recessive trait for a debilitating disease have tattooed his or her body someplace an indicator of this so that two people wouldn't fall in love.

And at one time in my class, we had a long discussion about where on the body that tatoo ought to be.  So —

BARONESS KENNEDY:  My grandmother, you know, in private part might never have seen the light of day, you know. 

DR. HURLBUT:  So you see the drift of my question.

BARONESS KENNEDY:  Yes.  Well, we haven't yet looked at in detail the way in which the National Health Service is going to have to accommodate this huge area of change.  We see it as having an enormous impact. 

One of the things that we feel is a relief to us in Britain is that if you have a National Health Service, in many ways the fears around insurance and unemployment, and discrimination in those areas is greatly reduced, because people get health care anyway. 

And that is one of the wonderful things, and that is one of the arguments is maintenance is better, and that genetics can be accommodated within it.  But we also feel very conscious of the fact that people have the right not to know information about their genetics if they choose.

We also think that increasingly the relationship between patients and doctors in Britain is becoming much  more like the American model.  I mean, I think previously patients were much more passive in Britain, but now they are conscious of themselves as being active decision makers in their health care.

And they are much more informed, and they go to their doctors with demands in a way that perhaps in the past they didn't.  So in those circumstances, we do think that patients will be probably driven to seeking information and wanting to have genetic tests.

However, I can't imagine ever any compulsion being something that people would see as desirable, the idea that people should be required to disclose.  I mean, those are difficult issues that we are going to have to engage with, but at the moment the idea requiring people to do it is something that we would resist.

DR. HURLBUT:  Have you entertained the possibility that there might be some situations in which you require people not to do it?  In other words, where there is such a mis-impression about the implications of findings?  Do you see what I am talking about?

BARONESS KENNEDY:  No, I would like for you to explain it better.  An example.  Can you just let me have an example of what you mean?

DR. HURLBUT:  Well, say for example that with breast cancer genes.  There is a widespread misperception about that, and how probable your —

BARONESS KENNEDY:  Yes, that was one of the things that I was talking about in terms of over-the-counter testing, is that the area in which we have engaged with that has been about — is in the current work that we are doing, which are there are tests which usually need mediation. 

They need explanation, because a simple reading of the test is not going to be good enough.  And therefore if people start acquiring information, for example, using the internet, and contacting laboratories privately because they don't want their information to be in medical records, for example.

Then the fear that is being expressed is that many of those people will receive information which they themselves misinterpret, because it is not being done and loaded for them in the right way.

And they are not having the sort of medical assistance and counseling that is necessary, and that kind of mediation is important, particularly with some of those tests which are complex, and where things are multi-factorial and so on.

And the moment the general public imagines this, and it is almost like a determinant where you will be told the date on which you are going to die.  They have a very optimistic idea about exactly how predictive tests are.

And I think that with a process of education that we have to go through in letting people know that it is not quite like that.  But the difficulty we think is that many people, if they fear that information is not going to be protected it within the National Health Service, may opt for private testing.

Then, of course, the doctors wouldn't have the full picture and wouldn't be able to give them the right kind of health care.  But the other thing is that they may not get the right kind of, if you like, support, and counseling, and mediation in dealing with the information.

CHAIRMAN KASS:  Thank you very much.  The member for Improved Social Insurance would like to ask you a question, and I will indulge you if it is brief, and then we have to take a break.

PROF. SANDEL:  It is brief.  It is just to consider a note for a possible future project on genetics and insurance, and it is provoked by Charles pressing for the principle. 

Here is the issue.  Insurance is a mechanism for pooling risk, and in the case of auto insurance — oh, and it is for sharing risk.  But the reason for the sharing is not some principle of social solidarity and equality. 

The sharing is based on ignorance, of not knowing in the case of life insurance of who will die when.  But the not knowing generates a social practice that involves sharing or pooling the risk that I will die sooner than you.

And in the case of auto insurance, for example, I don't want to be pooled with bad drivers.  If we could know who will have auto accidents and who wouldn't, that would be a good thing, because we could make the liability fall on the bad drivers.

But that in the case of life insurance, suppose we could know through a new genetic technology when every person would die, then there would be no reason for the sharing, because the ignorance that underwrites the sharing would be dispelled, and there would be no social practice of sharing the risk that someone will die sooner rather than later.

And the question that that poses ethically, and this isn't to answer it, but it is to suggest the question, but the question is do we want to dispel all of the ignorance that underwrites the practice of sharing risk that life insurance as a social practice permits us to do.  So, that is the question.

DR. KRAUTHAMMER:  So why do we take x-rays and do liver function tests?

CHAIRMAN KASS:  Gentlemen, we have a schedule, and —

PROF. SANDEL:  And we have a topic for next time don't we?

CHAIRMAN KASS:  Thank you for a wonderful presentation, and a wonderful discussion.  Twelve minutes.

(Whereupon, at 10:06 p.m., the meeting was recessed and resumed at 10:24 p.m.)

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