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
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
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
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
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.
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
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
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.
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
Why five years, and what is going on during the
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
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
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
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
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
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
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,
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
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.
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
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
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
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
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
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.
BARONESS KENNEDY: Yes.
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: No.
CHAIRMAN KASS: I have —
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?
BARONESS KENNEDY: Absolutely.
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
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
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
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.
CHAIRMAN KASS: Please.
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
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
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
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
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
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
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.
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.
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
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
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
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
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
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
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
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
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
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.
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
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
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.)