Download Creating Perfect People?

2000 Templeton Lecture
Creating Perfect People?
The Genetic Revolution and Human Possibilities
Professor Philip Kitcher
Introduction: Associate Professor James Beattie:
Welcome to the annual Templeton Lecture. The Templeton Lectures were established in 1990
with a generous gift to the University from Emeritus Professor Charles Birch after he won the
prestigious international Templeton Prize for his contributions to the interface of science and
religion. They are administered by CHAST, the Centre for Human Aspects of Science and
Technology in the Faculty of Science. Those of you who are not members are welcome to join
CHAST with a very modest subscription donation to the University.
The 2000 Templeton Lecturer is Professor Philip Kitcher. Professor Kitcher was born in London
and received a First Class Honours degree in Mathematics and History and Philosophy of Science
from Cambridge. He then went to the United States to obtain his PhD from Princeton in the
History and Philosophy of Science and has since pursued his academic career in that country. He
has moved more-or-less counter-clockwise around the States, with academic appointments at
Vassar and Vermont in New England, Minnesota in the Mid-West and, in a better climate for 13
years, at the University of California at San Diego. From there he returned to the East Coast last
year as Professor of Philosophy in the very distinguished department at Columbia University in
New York City.
His interests lie in the general questions in the philosophy of science, problems in the philosophy
of biology, and issues in the philosophy of mathematics. His books include Abusing Science: The
Case Against Creationism published in 1982, The Nature of Mathematical Knowledge in 1983,
Vaulting Ambition: Sociobiology and the Quest for Human Nature’’ in 1985 and most recently
The Lives to Come: The Genetic Revolution and Human Possibilities in 1996. The last arose after
Professor Kitcher spent a year as a Library of Congress Senior Fellow examining Bio-Ethics
Issues in Molecular Genetics.
So he is eminently qualified to deliver a Templeton Lecture, which is to be on a ‘topic of interest
to CHAST such as bioethics, science and religion, or environmental ethics’. We are very pleased
then to hear Professor Kitcher address us on ‘The Genetic Revolution and Human Possibilities:
Creating Perfect People?’
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Professor Philip Kitcher:
Thank you very much. It’s a great honour and a pleasure to be here this evening. I’ve had a
wonderful time in this country and I’ve been constantly amazed by the warmth and hospitality of
the people who have welcomed me here, and it’s really been quite wonderful.
What I want to do this evening is to talk to you about the significance of a program of
research and that program of research was epitomized on the morning after I arrived by a joint
announcement by Craig Venter, who is an American scientist working privately in a private
corporation and Francis Collins who is the American director of the National Institute of Health
that supervises the American government funded genome project. Now that announcement came
as, shortly after I landed, both scientists had agreed, rather reluctantly, to collaborate on a draft of
the map of the so-called human genome. Now this is a great symbolic moment for them but I
think its significance has been widely misunderstood and in my remarks this evening I will try to
explain what its significance is and the kinds of challenges that it poses for us. So let’s start with
context.
First of all we’re living through one of the greatest scientific revolutions in the history of
any science. It’s only real rival is the episode known as the scientific revolution of the
seventeenth century. Since 1950 roughly, when molecular biology really began to be born, there
have been discoveries apace. Things that were deemed to be impossible have come to pass and
they have been assigned first of all to laboratory technicians and graduate students and even
eventually to machines. This shows no indication whatsoever of slackening. And we can
confidently expect that biological discoveries will continue to flow in during the course of the
next century. In this long process - this great revolution - the mapping and sequencing of the
human genome is an event more important for its symbolism than for anything else. As I will be
explaining this evening, it’s not really the heart of what is going on and it’s not even the place
from which most benefits can most be expected to flow. But let me begin by looking at the
enterprise of mapping and sequencing and coming to see the kinds of information that are being
put forward for us.
So let’s start with an old map, about four years old now, of part of the human genome and
you can see that what it is, is a set of pictures of individual human chromosomes with little signs,
accompanying the pictures in some cases, indicating regions at which there are known mutations
or genetic changes that are associated with various kinds of disease and/ or disability. For
example here, on chromosome 13, there is a mutation that causes a form of early onset breast
cancer.
So that’s the mapping part. You take human chromosomes and you identify regions in
which genetic changes are associated with various kinds of human conditions - perhaps with
diseases and disabilities - but there is no reason to restrict it to that. That’s the mapping part.
What about the sequencing part? Here’s an even older slide (now about 6 years old) and it is the
sequencing of a piece of mouse DNA. I don’t know whether you remember reading about this in
the newspapers. This is a piece of DNA from a ‘fat’ mouse - one of those artificially bloated
organisms that is supposed to carry the so-called OB gene, and this is the sequence of the OB
gene. It’s a long list of As, Ts, Cs and Gs standing for the four bases that jut inwards from the
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backbones of the DNA double helix.
Now by reading this sequence information you can get immediately, from the genetic
code, you can get some ideas of the sequence of amino acids. That is the fundamental building
blocks in the protein associated with that gene and here in particular you see that the scientists
publishing this sequencing data have lined up a particular set of triplets of bases with some
symbols for amino acids.
Well what good is all this? What kinds of things can it do for you? Well the hope is, of
course, that by understanding where our genes lie on the chromosomes and by producing this
sequencing down the road we’re going to get strategies of intervention in human disease - we’re
going to get cures. This is what’s promised. And, indeed, certainly since the human genome
project began there has been a lot of advertisement for a royal road to a new kind of medicine.
So let’s see where we start. We start with a connection of some sequence data - a long
list of As, Cs, Gs, and Ts and a manifest condition. It might be obesity, as in the case of that poor
mouse. And from that sequencing data by using the genetic code you can read off the amino acid
sequence of the protein for which the gene codes. What good is that? Well what you’d like to do
of course is to figure out what the protein is really like, what it does, what the causation of the
trait associated with the gene is, and then devise on that basis, some strategy for intervening, if
it’s a disease or disability.
So you’d like to go down the royal road from the sequence data to some sort of strategy
for preventing or intervening with disease. Well this step was easy and this step was pretty
straightforward. The trouble is that nobody has any general method of taking the next steps.
It’s well known that getting the amino acid sequence of a protein doesn’t tell you what the
shape of the protein is. The protein-folding problem is still a very hard one. And even if you had
that you’d still have to make some inspired guess about the function of the protein. And even if
you had that, you’d still have to make some inspired guesses about how the condition is cured.
And even if you had that you’d still have to be quite original and inventive to find ways of
intervening. So this royal road is much more difficult than it initially appears. Indeed the truth
of the matter is that there is no mechanical method of getting from molecular sequence data to
cures, strategies for prevention or intervention, and all responsible scientists involved in the
business know this. What they also know is that the principal ways ahead in the coming decades
are not going to come from understanding the sequences of our genomes but rather the sequences
in organisms that we can manipulate - that we can study in some detail - whose physiology and
development we can hope to figure out over the next decades. Things like yeast, worms, flies
and mice. These are the important ones. So really the scientific action was largely over by the
time Venter and Collins made their announcement. Over because Venter had already shown
years back that he had techniques for doing genomic sequencing - that he could sequence the
genomes of bacteria and then using those and similar techniques, people have already got the
sequences of yeast, worms and flies. This is where, in the decades to come, biological
breakthroughs will happen at a rapid rate. We will, in centuries hence, understand much more
about metabolism, physiology and development than we now do and some of that information
will be fed back into understanding human beings and human diseases. So that’s really the
picture. And if you start to think about the medical promise of molecular biology, we can already
put up a scorecard.
There are some molecular conditions we’ve known about for some time. Sickle cell
anaemia is one of them. The molecular basis of sickle cell anaemia was figured out about 50
years ago and despite the fact that molecular biologists have had this information for a very long
time, there’s been very little improvement in the conditions of those people afflicted with this
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disease.
Roughly 8 years ago thanks to a great deal of wonderful genetic work and effort, people
figured out the genetic sequence of the mutant alleles associated with Huntingdon’s disease. This
is a dreadful disease that strikes people in middle age - usually around 40 or 50 - and causes them
to decay neurologically and they spend about a decade or so, curled up in a hopeless foetal
position, virtually unable to fulfil any normal human function. Well once again, although this has
been known for a while, so far there has been very little promise of treatment.
One of the great successes was the discovery of PKU (phenylketonuria) the genetic
condition which affects people that are unable to metabolise a particular amino acid. If children
are diagnosed very early and are given a special diet they can develop almost normally. This was
a good medical triumph but it antedates the kinds of techniques that are now being used. It can’t
really be ascribed to them.
About 12 years ago, people discovered the sequence data involved in cystic fibrosis, and
this is a partial success story because in the light of the sequence data people were able to figure
out where the defective gene was causing trouble in many of the kids where cystic fibrosis was
causing trouble and they could start partial forms of treatment and this has been a good thing.
About 6 years ago various forms of breast and ovarian cancer were studied by molecular
methods and the outcome of that has been that women who are now at risk can find out if they
carry the defective gene associated with the cancer in their families. Unfortunately the very
women who need this are women who need to have methods of detection available to them in
their 20s or 30s and unfortunately, although one can advise them to have regular mammograms,
mammograms are not very good at detecting incipient tumours in the dense breast tissues of
young women. So there is very little that this information can do.
Colon cancer is a bit more promising. Here, too, alleles implicated in colon cancer have
been found, sequenced and here, perhaps, there is a genuine possibility of making some
preventative steps by monitoring people with these alleles.
So that’s the report card and we can expect the future to be much like this on a much
grander scale. A few partial successes and a fair number of cases in which we can just identify a
gene and really not go much further than that. What’s going to happen in the near future? There
is all this genetic information. We’re going to be able to test people and we can give them a fair
number of types of genetic tests. Some of these are genuinely beneficial. Consider for example,
diagnostic tests. In the light of genetic information, kids with cystic fibrosis can be picked out
much more quickly and much more accurately and that generally makes a difference to their wellbeing. The longer that the disease goes untreated or unrecognised the shorter their life
expectancy and quality of life is. There are other cases in which you can disambiguate the
condition. You can have high levels of so-called bad cholesterol for a variety of reasons: if you
eat all the wrong foods, or if you have a malfunctioning liver protein. It helps if you have a
doctor who can administer a test, which can tell which one you have, if you’ve got high levels of
cholesterol. So he can really tell you to shape up or perhaps shake his head and tell you that you
are one of those unfortunate people who, no matter what they do, are going to have problems
with their cholesterol. These are genuine helps for the doctors but they are not really genuine
breakthroughs for medicine. They are more or less continuous with what goes on in medical
improvements all the time.
Where the real excitement comes is the fact that we can make predictive tests. We can
look at individuals early in life and we can say “Ah! You’ve got an allele that is associated with
such-and-such a disease condition. You may not have it now, but we can predict that you’ve got a
higher chance than normal of getting - it might be diabetes - later on. We can even do it before
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birth; we can do it with embryos. We can even do it with people who suspect that they might be
carrying genes for certain diseases.
Now, in some cases, and I’ve already suggested that this is likely to be rare, there will be
medical benefits. That is, you’ll be able to avoid or lessen the severity of a condition that you
might have had. That’s unusual. In most cases the doctors can give you advice but it’s advice
they would have given you anyway. If, for example, it turns out that you are at high risk of
having some form of heart disease in middle age, then you will typically be told, at least by an
American doctor, all the usual things: lose weight, engage in regular exercise, eat lots of green
leafy vegetables... all of those sorts of things, which are quite good advice, but quite independent
of the genetic test.
You might think that in some cases there are non-medical benefits. That it really helps
people to know in advance what’s likely to strike them so that they can make plans for their lives.
Indeed, many people who are at risk for various kinds of diseases have thought this, before the
tests were available. Huntingdon’s disease is a particular case. Families who know that they
have Huntingdon’s disease somewhere in the family can face, throughout their lives, that they
have a fifty percent chance, typically, of contracting this dreadful disease. And so it was thought
by people who were at risk, that they would really want to know whether they were one of the
lucky or the unlucky ones. Before the test was available, over seventy percent of Huntington’sat -risk- people said “Oh yes, I want to know.” After the test became available, about eight years
ago, less than 20% of these people actually take it. And the reason is obvious. They know that
they would be devastated by the information if they found out that they tested positive. Their
lives would be ruined.
OK. We’re going to enter the world of genetic testing and we’re going to enter it for a
very special reason and that reason was symbolised by the Venter-Collins conference, whose real
significance I now want to come back to. The true significance of that meeting was that it didn’t
come from some Governmental agency or some Governmental project alone. It came from an
alliance - a very uneasy alliance - between a private company, a private corporation, and the
Government. It’s well known that biotechnological companies have invested a great deal of
money in research that will lead them, in the next years, to be able to market a large number of
genetic tests. They want those genetic tests to be taken. They are likely to flood doctors’
offices in the next few years with pamphlets advertising particular tests. I don’t know how it is in
Australia but in the US the average amount of genetic education for a doctor is about four
classroom hours, maybe a decade ago. So the poor doctor, especially in a climate in which he
knows that he is going to get sued if he does the wrong thing, will say “oh well, you’d better take
the test.” People will be advised to take the genetic test, I predict.
Well, that would be all right if they had good genetic counselling. Trouble is they don’t.
The number of genetic counsellors in the US, and I don’t know whether it’s any better here, is
woefully inadequate and what’s more, the quality of genetic counselling sessions is hardly
satisfactory, at least in the US. There is a sad statistic about the US genetic counselling. If you
say that a session is “successful” if the client gets the information that he or she wanted and the
counsellor thinks that he or she got across the information that was most important for that
particular person, only 4% of counselling sessions are successful. And that’s not very good.
But it’s not just the fact that people may be swept into taking a test that will give them
results they can’t handle and that they won’t be given very good genetic counselling, or enough
of it. The really bad thing is that this genetic information is wanted by all sorts of people,
particularly by insurers and employers. Again, I think life is better in Australia. You, at least,
have managed to have full-scale medical coverage for everybody. I don’t know how good it is
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but I hope you’re satisfied with it. In the US it’s a very different story. In the US there is a
significant number—fourteen million, and growing—who are not covered by medical insurance
and people are finding out that they are almost uninsurable. I say almost, because in some states
of the Union there are guarantees that allow these people to have some kind of insurance at high
cost with caps on the amount of benefits they can get. What that means is that women who test
positive for breast cancer alleles, the forms of the genes that run in their families, that are
associated with breast and ovarian cancer in their sisters and their cousins and their aunts, can
find themselves deprived in an instant of their medical benefits and of their jobs. This has
happened. And indeed in the US I rarely give a lecture on this topic without somebody coming
up to me afterwards and telling me a new story about genetic discrimination.
These problems are, in fact, soluble. It would be possible to improve the quality of
genetic information among doctors, to beef up the amount of genetic counselling that is available,
to make sure that genetic tests were appropriately regulated, that there were insurance schemes
covering health, life and disability, available to all, and that genetic discrimination was not
available to be used in employment. All of these things could be done. In the US there is little
sign of any political will, unfortunately, to do them. I hope it will be better in Australia.
Now so far I have talked about some real benefits which I expect to come within the next
century as we learn more and more about the basic biology of organisms. The fact that we aren’t
immediately going to get cures for the major diseases, the problems of various kinds of genetic
tests (and we shouldn’t forget either the promise of the more mundane kinds of test) and I’ve
suggested that the problems that I’ve mentioned so far can easily be solved if we have the
political will to do so.
I now want to turn to what I think is the really hard problem. And so we come to the
topic that really gives my talk its title this evening. A couple of years ago I opened my New
York Times and I saw this article:
Well it threw me for a moment. I didn’t realise at first that it was an advertisement for a film. I
thought things were happening even faster than I had predicted.
But no, it’s an advertisement for a movie called “Gattaca”.
And the idea is of course that you can engage in ‘choice of
children’ by means of pre-natal genetic testing. Tomorrow
we’re going to be able to engineer the children of our dreams,
so the story runs. Well some of this is genuine fact and some of
it is science fiction. The first thing I want to do is distinguish
the fact from the fiction so let me identify some ways in which
in the decades to come you might think people could choose
their children.
First and most obviously, they can do what is already
done. In a society like this one in cases of Downs syndrome
and such cases you can decide to terminate a pregnancy if the
foetus is found to be carrying some particular genetic or
chromosomal condition.
There is a more positive thing you can do, and some
women do this, namely you can ‘harvest’ some eggs (that’s the
technical term in the trade) which you fertilize and then form a
number of zygotes (that is fertilised eggs), you can do a genetic
analysis, and then you can make a choice about which ones to implant.
You can imagine the prospective parents of say ten years from now saying “Oh! I like
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number 17. Number 17 is a really good one. Number 11 is not bad either but I don’t think I could
handle two kids at once. Let’s implant number 17, put number 11 in the freezer in case we don’t
get lucky next time, and the rest can go. That’s realistic.
Now, another thing you might think that you could do is actually replicate a human
nuclear genotype. That is, all of the nuclear genes, the vast majority that lie within the nucleus of
a human cell. This would be to do for a human what Ian Wilmott did with that famous Scottish
sheep, Dolly. So the idea would be then that you could, if you wanted to, choose a child by
cloning yourself, or someone you admire (Pat Rafter perhaps?) What other great Australian idols
are there? Probably if I knew more about Australian football I could reel off a whole list of them.
So that’s a third way.
Finally, the most exciting fantasy of all, which is to insert just the genes you want into a
zygote. Well let me disentangle these because it’s important before we confront the ethical and
social problems that we find out what the important facts and possibilities are.
So let’s start at the bottom with
this one. This is real science fiction, at
New
DNA
least for right now. Now you can do a
rather crude form of genetic therapy.
Target Cell
That is, if you’ve got a cell with a
nucleus. (You’ll notice I’m terribly
cartographically challenged. These are
very bad pictures —any reputable
scientist must be blushing for me at the
moment.)
So you can shove in a bit of extra
DNA into the cell. Well that doesn’t do
you much good all by itself. You
‘Good’ Alleles
New
typically do this in this sort of situation
DNA
‘Bad’ Alleles
where you’ve got some bad alleles here.
They’re not doing the right thing;
they’re making bad protein so something is going wrong. What you’d really like to do is replace
them with this nice good green DNA here. But if you just shoot the DNA into the cell then, even
if gets incorporated into a chromosome at all, it’s just completely random. So it might land up
here, instead of where you want it. That would mean that you wouldn’t produce what you
wanted. What you’d really love to do is to snip this thing out and replace them with other forms
of DNA you like. And then you’d get a normal, or even a ‘better than normal’ cell. But you
can’t do that, at least at the moment. So what you have to settle for, is inserting the DNA you
want somewhere in the cell. And you then end up with the bad one still around and the good one
somewhere else, hopefully performing its function. Well even if you’ve equipped it with the
appropriate bits of DNA to turn it on and off there is still a problem because what you’ve now got
is some unmatched chromosome. You’ve got a chromosome which has got a bit of extra DNA in
it and it’s all too likely that when the cell divides (if this is a cell that’s going to divide) that that
DNA will be looped out, snipped out and lost.
Now this is, in general, in an abstract way this is a very important challenge to
contemporary biology. To try to find ways of getting fine-grained molecular scissors and finegrained molecular pastes so you really can snip things apart and put them back together, but until
that becomes available, the idea of engineering children by replacing bits of DNA isn’t on.
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What about cloning? Well, cloning works, sometimes. It’s very interesting. Just this year
in Science there was a review of various efforts that have been made in cloning and in all sorts of
species and the success rates are still very low.
What you do in cloning is this. You take out the genetic material from an egg and you
bring the nucleus containing the genetic materials from somewhere else and you put it in its
place. Then this divides; you stimulate this to imitate the impact of the sperm. This is a very sad
day for males. The last thing you thought you had was this little bit of Y-chromosome, this bit of
genome that might do something in the reproductive process. But no, you can actually stimulate
the cell electrically and make the cell go on its merry way. And eventually you get a cluster of
cells that’s big enough to implant in a uterus and then gestation proceeds.
So that’s how cloning works. Well at the moment, cloning isn’t likely to be done by
anyone reputable in human genetics simply because the success rate is so low. But even if it
weren’t, it’s important to get straight what cloning could achieve for you. When Wilmott first
produced Dolly, the commentaries in the newspapers were full of stories about people living
forever and reproducing themselves. This is completely misguided. If we took my DNA (and
who would want to - not even my wife - certainly not my kids) and sought to make a replica of
me - you’d fail. You’d fail for some very obvious reasons. The product would be less like me
than an identical twin. After all, identical twins not only share the same nuclear DNA, they also
share the same contents in the material outside the nucleus, they live in the same uterine
environment for nine months and they are usually brought up in very similar environments. You
couldn’t do that with me. I mean, my environment, in which I grew up, is long gone. There are
times when I find myself in Australia thinking back to the England of the 1950s but it’s gone, it’s
gone.
So that’s completely off the cards. It’s also morally unjustified. There is no reason to try
to dictate the future of your children by trying to make them a carbon copy of someone else. But
there are perhaps a few cases in which it would be legitimate, if cloning were safe, to let people
engage in it.
Suppose for example that the woman in a couple has mitochondrial disease. That’s where
some of the DNA outside the nucleus is associated with a mutation that causes some disease
condition. There’s a case where people might say that cloning is justified because it would be
good to have an egg, or an egg without a nucleus, supplied by a different woman, who didn’t
have that kind of genetic disease.
Or, and this is a bit far fetched, you have a widow who is no longer fertile whose
daughter, an only child, is dying. Perhaps she should be able to make a nuclear clone of her
dying daughter. Or you could have a lesbian couple who want to have a child to have a
biological connection so one could supply the nucleus and the other could supply the rest of the
egg and the womb. I suppose that if you believe a high rating should be given to the value of
biological connection to the children then these are situations in which the thing would be
justifiable but not, of course, until it is safe.
So here’s my conclusion. If cloning becomes risk-free and if we believe people should
have children with as strong as possible a biological relationship with themselves, [by the way
that is a very big if - it seems to me that very often these kinds of technologies downplay the
importance of such things as adoption.] Then cloning may have a place, I say, at the fringes of
assisted reproductive technology.
OK. So I’ve gotten out of the way two ways of producing children and we’re back with
IVF, choosing which kind of zygote you wish to implant or selective termination of pregnancies.
Now, how do moral problems arise with these? They arise because at any foreseeable
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stage, there is likely to be a set of conditions that we’ll be able to diagnose before birth but which
we’ll not be able to do anything about after birth. And extreme prevention consists of identifying
these and not bringing into the world infants with these conditions. Now there are in fact some
benign examples in which this is used. One of the most famous, if not the most famous, is TaySachs disease. This is a disease that strikes two major populations: Ashkenazi Jews and some
French Canadians. It’s a condition, which in the infant consists of early neural degeneration.
Essentially the kid’s nervous system just disintegrates right from the start, so children typically
die at around about age one but can be kept alive a little bit longer, given elaborate procedures. It
is agonising for families that watch their children go through this. Since the development of a
test for this genetic disease, the incidence of Tay-Sachs disease is 1% of what it used to be - a
hundredth. That, I think, is a benign thing. Now some people are opposed to genetic testing and
selective termination of pregnancies on principle but if there is ever a case in which it seems that
that’s justified, it seems to me it’s this one. A great deal of human suffering is avoided.
Similarly for other similar syndromes, terrible childhood diseases like Lesch-Nyhan
syndrome, a disease affecting boys who have a compulsion to gnaw themselves - they gnaw their
lips, they gnaw their fingertips and they are grossly retarded. Now these are the cases at one end
of the spectrum. But already around the world there are some disturbing examples of use of
genetic testing to further other ends. In China and in Northern India it’s well known. There’s a
practice of going to the clinics and getting an amniocentesis and then terminating the pregnancies
where the foetus is found to be female. In some parts of Northern India there are villages there
are dramatically huge sex ratios - there are many more boys than girls. And the women who are
doing this are doing it in part as an act of mercy. They do it in part because they can’t bear to see
their own female children humiliated, abused and neglected with shortened and poorer quality
lives. If they’re going to have a child they’d like to have a child whose life can really flourish.
Now, there is a rationale for a broad use of the information that we have - for a broad use
of prenatal tests and it goes like this. Every parent knows that we ought to do the best we can for
our children. If our children have conditions that will make them targets of social prejudice or
that will predispose them to lose in society’s competitions, the quality of their lives will be
depressed. That’s an argument that can be used to justify quite a lot of prenatal genetic testing.
As we reflect on it, we can see that it prepares the way for just the sort of thing that we see in that
slide I showed from “Gattaca”. The kinds of choices that are made by parents who want their
baby to succeed in society. Look over here for example. Musical ability. You might not get a
Dawn Upshaw or a Mozart but why should your child be tone-deaf? It’s a very short distance
from “I wouldn’t like my child to be tone deaf” to; “well, it’d be kind of nice having a Mozart or
a Dawn Upshaw.”
Now, as we think about this it’s important to recognise more systematically than the slide
from “Gattaca” does, the variety of genetic tests. Start with the ones that are most obviously
benign and beneficial. Early onset diseases: Tay-Sachs syndrome, Lesch-Nyhan syndrome, San
Philippo syndrome. A terrible syndrome in which the kids are not only retarded but they also are
incredibly ill-natured and violent towards their care givers. It takes a great deal of moral fortitude
to look after one of these children. Then there are diseases and disabilities like cystic fibrosis
and the various muscular dystrophies. We might put in here various kinds of blindness, deafness.
We might put in, with an eye to a case that’s currently been in the press, dwarfism. Then there
are late onset diseases. Here the genetics is much more complicated and because the genetics is
much more complicated, you can’t say: “Oh well, you’re sure to get breast or ovarian cancer.”
The results will be in probabilities: “Mrs Smith, the foetus you’re carrying has somewhere
between a 24% and 42% chance of developing breast and ovarian cancer, somewhere between
2000 Templeton Lecture – Philip Kitcher
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the ages of 30 and 50. That’s the sort of information. Diabetes: a similar story. Then body type.
Again most of these will be probabilistic but there will be cases in which one will be able to say
for sure, what the form of a trait is likely to be. And then down the road there are conditions of
temperament and forms of behaviour, IQ, attention deficit disorder—if such a thing exists—
sexual preference and other temperamental features.
Now, in saying that there could be genetic tests for these conditions I want to make it very
clear what I am and what I am not saying.
I’m saying that there is a genetic basis on which one can make some sort of probabilistic
prediction about the temperament or the form of behaviour that the child or the adult that would
grow from a particular foetus would be likely to have. That’s a mouthful that’s usually
abbreviated in the press to something like “We’ve discovered the gene for thrill-seeking or
altruism” or something else. Now let me go very slowly here. It’s easy to lose one’s way and it
pays to be careful. When I say there’s a genetic basis for a trait I don’t mean that individuals with
the particular genotype or set of alleles will invariably develop the kind of temperament in any
environment. What I do mean is this. There is a genetic basis for a trait when—let’s take a
minor example — diffidence— a little bit of social shyness. There is a locus, or various loci, at
which differences in the form of the gene (allelic differences) correlate with differences in the
form of the trait in a certain set of environments. For example, those in which children are
normally brought up.
That means something like this. If we go around this room and we look at various people
and we look at various places in their genome, we’ll find certain differences. And given that the
people in this room were generally brought up in similar sorts of environments, we’ll find there’s
a probabilistic association. One group with one set of genes are perhaps 30% more likely to be
shy than those with another form of the gene. And perhaps that would hold for most of the
population if we made it bigger and bigger. That means there might be alleles, (I made them up
so I’ll give them names D and D-) so that children who carry two copies of the gene D- are more
likely to be diffident than children of genotype DD or DD- when the children are reared in the
same environment, drawn from a set of standard environments. That may well turn out to be the
case. It doesn’t mean that the genes cause the diffidence. The causation of temperament is likely
to be an incredibly complicated thing involving many genes acting and many environmental
variables that we can only guess at. All I’m talking about are associations. Those are the
statistics that the prospective parents of the future might be given.
So the true story might look something like this. I’m making it up. There’s never a very
high probability of kids being very shy, but if these are the standard environments, the ones in
which children are normally raised, there’s a regular effect. Kids with this genotype are a little
bit more likely to be diffident than kids with this one. And in these rather unusual environments
here the effect is magnified, but notice that in these rather unusual environments here, it’s
reversed. So you can’t think of the genes as causing the trait in any simple fashion but, if the
environment is normal, then there’s a higher probability if you’ve got this genotype than if
you’ve got this genotype.
Well, shyness is one thing. The same might go for alcoholism, or IQ, or same sex
preference, or ability to learn in school, or aggression in social situations. So now we can
imagine. Let me make a prediction. This is likely to be conservative. The pace of the genetic
revolution is so fast that within a decade or so, I predict, relatively cheaply, anyone who wants to
will be able to take a battery of genetic tests on a foetus, for perhaps 500, perhaps 10,000 traits, at
once. And that these will include, examples from all of the groups that I mentioned earlier. That
is not just disruptions of early development, but serious diseases of development and disability,
2000 Templeton Lecture – Philip Kitcher
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late onset diseases with probabilistic predictions, things about body type and even behavioural
traits.
So, if you’re prepared to go in for in vitro fertilisation then you can have a battery of
genetic tests done and you can say “I do like the look of number 17. It’s got all the right
intelligence alleles. Good height, no major diseases, perhaps a slight risk of hypertension, that
we could live with.” And then make your choice accordingly. Now you might think this is
horrific. This is going too far. And say, “We should call a halt to this. Such kinds of choices are
morally impermissible”. We started off with Tay-Sachs disease and maybe if you weren’t
opposed to abortion in principle, you went along with my idea that that was an act of mercy. But
when you get to things like intelligence, hair colour, or body build, or musical ability, then things
have just gotten out of control. So what we should do is to stick to handling diseases.
So use of a prenatal test is only permissible when the test is able to detect disease or
disability or propensities, that is probabilities, of disease and disability. Well let’s ask an obvious
question. What’s going to class as a disease? The history of medicine is full of debates about
what counts as a disease. It’s a sobering thing to go through the history of medicine and look for
the kinds of things that our predecessors have counted as diseases. In the 1960s it took a long
fight by gay activists in the US to get homosexuality taken out of the diagnostic and statistical
manual.
So what’s a disease? Well, two possible answers. One answer might be: You can’t really
give an objective account of what a disease is. Disease is just the kinds of things that people find
painful and uncomfortable. So disease is always community-relative.
Another answer would say: “Of course you can. Doctors know what they’re doing when
they diagnose diseases. A disease is a condition in which some organ or system in the body
doesn’t fulfil its normal function. Something is wrong, something’s broken down.” Well, this
looks promising for a moment until you ask another question: “How do you identify functions?”
That’s a hard question, to say what are functions.
The best going account that I know of is to say that a function of an organ or system is
that effect of its presence, which has been the target of natural selection. The organ or system is
there because of the function it fulfils. It seems to me possible, given the statistics on breast
cancer, that it’s functional for women to reproduce very early. After all there is a serious effect
of breast cancer in women who delay reproduction. So perhaps that’s a functional thing to do.
But it’s not necessarily a thing that many women today want to do. Some want to but many do
not. And that points something up. If you think that the notion of function is explicated by this
definition then it makes it fairly clear that many of the things that we want for ourselves and for
our health, don’t have any obvious connection with our evolutionary history. We don’t really
care what natural selection did for us or our ancestors in the past. What we care about is the effect
on us now.
But I think in any event that this whole approach to try to understand disease objectively
and to try to draw an objective line on the nature of disease is misguided and it’s misguided for
one simple reason. Some diseases are not serious enough, even if we could define the notion of
disease, for us to bother about. For example, I’m allergic to nuts. It’s a genuine disease; it’s a
deficiency on my part. I used to think it was quite mild but I find that it is actually life
threatening. But is that something one wants to permit or encourage genetic testing for? Surely
not. We are, I think, from the beginning, up to our neck in value considerations when we start
thinking about the use of genetic tests. And we do better to face those directly than to try to craft
some notion of disease that will draw this line for us. So I suggest that we approach this problem
in a rather different way.
2000 Templeton Lecture – Philip Kitcher
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I suggest that the principle that really ought to guide us is this one: We should do what
we can to forestall conditions that will adversely affect the quality of human lives. Now you can
think about this principle in two different ways. You can think about it in terms of keeping our
social framework fixed, and applying that principle to make decisions about prenatal tests for
selective abortion. That has a worrying consequence, because if you apply the principle that way
then it will legitimise what the Indian women are doing. In fact it’s exactly their rationale.
Within their social framework, being female genuinely is a marker for lowered quality of human
life. So they abide by the principle in their practice of selective abortion. The principle has,
however, a more general employment. It can be seen as directing us to remove those social
conditions that make us view certain kinds of genotypes as problematic - in the Indian context,
the discrimination against women.
I’m going to conclude by enlarging on this theme. First though, something about the
central notion that I employ here: the notion of the quality of a human life. I suppose that all of
us, however reflective or unreflective we may be, have a sense of ourselves and of our lives —as
embodying certain things that matter to us. For some people it’s the work they do. For the others
it’s their relationships. Perhaps for most it’s a complex of the two - a kind of balance. But
there’s a theme to your life if you think about it. There are things that matter to you and things
that don’t. And it’s important that your desires and aspirations that are associated with the things
that matter to you - call those the central ones- should be satisfied. So I say that a life goes well
when the person has managed, quite freely and autonomously, to develop a conception of him or
herself, which is sustainable in the light of reflection and the desires, and aspirations that flow
from that theme are satisfied.
That’s compatible with the individual in question suffering a lot of pain, by the way.
Think of the great examples of people who overcome pain and disability (Helen Keller, Stephen
Hawking and so forth). They have a sense of themselves and what makes their lives go, and they
achieve things that they set as goals for themselves. Other things being equal of course, other
things do go better when they are more full of pleasure than pain, but I think that the pleasure and
pain dimension of life is much less important than this central notion of the life making sense to
the person whose life it is. And flowing from that there being goals and plans that are satisfied.
I think we can now begin to see that the things that strike us as most dreadful—things like
Lesch-Nyham syndrome and Tay-Sachs—are so bad because in these cases the human being
never has a chance at all. Never gets to be the sort of being that can formulate desires for itself,
that can have plans. All it can hope to do is lie there and be palliated. Now lives that are
palliated by drugs may be blissfully contented in the way that a two year old can be contented.
They may be more contented than our lives. But they aren’t lives of high quality. So that’s why I
think certain kinds of conditions—Tay-Sachs spring out at us (Tay-Sachs is a paradigm)—as the
kind of thing we don’t want to bring into the world. Now having said that let me return to the
central problem.
How well a person’s life goes depends very much on the social support available to
people with the pertinent condition. Take somebody who has an hereditary form of dwarfism for
example. If that person lives in a society in which considerable support can be given, it’s
eminently possible, and there are any number of examples of people with that condition, that the
person could flourish, could do very well - could live a happy, successful life. But that depends
very much on what the society is prepared to contribute and that brings me back to the last point
that I want to make.
I pose two questions. Given the existing levels of support, how shall we make best use of
pre-natal genetic tests? That may lead us to horrendous answers because it may be the case that
2000 Templeton Lecture – Philip Kitcher
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somebody living in Wyoming, where a young man, a couple of years ago, was put up against a
fence and beaten to death for being homosexual. It may well be the case that parents in
Wyoming would say, “I must have the test for the gay gene, because even if there’s a chance of
just twenty five percent, I don’t want my kid to be victimised in the way that homosexuals are in
my environment”.
But there’s another question. Given the resources of a society, what’s the best
combination of levels of support with the prenatal use of genetic tests? And that leads me to the
obvious ways of responding to the dilemma of the proliferation of pre-natal genetic testing. I’m
sure, many people in this room, if not all of you, feel that the idea of a rat race, which starts in the
womb, is a hideous perversion of the compassionate approach that’s embodied in the Tay-Sachs
prevention program. But one might also say that attending to traits like intelligence or same-sex
preference, or dwarfism, or obesity, or diffidence, or any of those things, since they affect the
quality of life of people who have the traits, taking a genetic test is just a simple extension of
what parents now do. After all they now try to help their children from the moment they exit the
womb: they enrol them in the right pre-school, get them in the right schools, all the rest of it.
This is just a simple extension of that. All the parents want is to ensure that they have the right
genetic stuff. Both these responses are, I think, correct and they result from the fact that we have
a background social dilemma. The genome project doesn’t come into an innocent world. It
comes into a world in which there are already prejudices and pressures. And the hope that’s put
forward in the name of the genome program is that genetics will solve all our problems. It won’t.
Earlier today, I went down to the Hyde Park Army Barracks. You have a wonderful
museum down there and I saw this picture reproduced—reproduced to show conditions in
London in the eighteenth century. It would be folly to say, “Ship these people off to Australia.
They have bad genes. They carry a human stain with them which will live on into the next
centuries.” I mean if ever there was a living refutation of the thesis that genes are everything it
must be this country.
The obvious answer to this predicament is: clean up the
social environment. Give these people a chance. And the obvious
answer to the dilemmas that confront us in connection with genetic
testing is: Combine our genetic testing with a social policy. Don’t
think solely in terms of genes and fiddling around with genes and
genes as the cure-all and preventing lives with defective genes.
Think also about what kinds of measures can be taken to improve
the quality of human life across the scale, across the range of traits.
And then, if you do that, some of these dilemmas will seem less
severe. If, after all, the Indian women could be sure that their
daughters would be born into an egalitarian society they wouldn’t
do what they do. If we could feel sure that high intelligence wasn’t
a sine qua non for a good life, that it’s OK to love someone who is the same sex as you, that
people who are a bit short or have rather large heads can still have wonderful futures and that
even people who have certain kinds of muscular decay and disability can also flourish. If we
committed ourselves to that, then the pressure to impose these unwanted tests would go away.
We could bring into the world; lives of people who could be expected to have decent quality
without limiting ourselves to an artificial standard—a narrow view of what it is to be human.
Thank you very much.
2000 Templeton Lecture – Philip Kitcher
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Chairman: Thank you very much indeed. Professor Kitcher has kindly agreed to entertain some questions. So if
you’d like to direct your questions to him, we don’t have a roving mike so please speak up.
Q: Your talk, and most discussions on this subject, generally centre around the question of what we want to do here
and now where we means the state. My first question is: Why don’t we just let the market decide? And my second
question which is a different version of the first question is: If we change the usual approach, rather than saying what
should we allow or do, to rather saying if the technology is freely available for potential parents to screen a whole lot
of embryos, if it’s available at low cost to other people, and it might well be in just a few short years time, why
shouldn’t they be allowed to exercise their choice just as they now exercise one part of choice, which you didn’t
mention in your list which is the most fundamental one—choosing the partner which you are going to have children
with.
K: OK. A very good question. You’re opting for one side of my dilemma. People make choices right now. This is
just an extension. What are we getting so upset about it? Let the market decide. Well, indeed I rather suspect that
the market will decide. I rather suspect that the presence of Craig Venter at that recent news conference, had a much
greater meaning than has been attributed to it. It means that this kind of technology is now beyond the phase of being
presided over by a regulatory agency or a government, misguided or benign.
But let me take a step back to answer your question. The first thing I should have emphasised was that I
firmly believe that these choices should be left in the hands of the parents. Indeed, what went wrong with the eugenic
movement in its most extreme forms in the early part of the twentieth century is that choices were dictated. That was
most obvious under the Nazi regime, but it was also true in the US. Reproductive freedom was sometimes taken
away. But I don’t believe that the untutored, unrefined views of people, manipulated by biotechnology companies,
are necessarily in their own best interests or in the best interests of our societies. When I look to the future you
describe, with a market in which the affluent and knowledgeable can be expected to select for traits like intelligence
and temperamental features, I see a hideous narrowing of our understanding of what it means to be a fully functional
human being.
I didn’t come down recommending governmental regulation of this. I didn’t come down saying “you have
to disallow certain tests”. What I made was a moral argument and what I would want very much to do is to have that
kind of moral argument and that kind of moral framework present in the genetic counselling that these people are
given. So I would like them to make choices, but I would like them not to be choices like the poor Indian women
who are pushed around by their society. I would like them to make choices that are genuinely their own and
genuinely informed by a process of discussion that goes through the kinds of considerations that I outlined.
Let me use an analogy. There are many things in our society that we don’t forbid but that we look down
upon people for doing. We don’t think that some kinds of so-called ‘adult entertainment’ are really worthy of the
attention of serious adults, for example. Now, if it were to be the case that genetic tests were freely available and
there was a climate of opinion in which it was felt that selecting against a foetus with a slightly higher chance of
being attracted to members of its own sex, or a somewhat higher chance of scoring higher on the intelligence scale,
was sleazy in the way that certain other activities are sleazy, then the work would have been done. So I didn’t
commit myself to a program of governmental intervention, but on the other hand I don’t think we can trust the market
to decide. I think if we’ve learned anything, from the way in which medicine has been handled in the US over the last
decade, it’s that putting these decisions in the hands of the market is awfully bad for people.
Q: How important is it to have a publicly funded health insurance system in terms of how genetic testing affects
them?
K: I think it’s absolutely crucial. I think, that what will happen in the US is that, in the short run, it will go on not
having a public health system, insurance underwriters will continue to tell the public that they have to have genetic
information if it’s available to their clients because if they don’t have it then the clients will practice adverse
selection. That is, those at high risk will buy and those who are at low risk will buy less or not buy at all. I’m not
sure that that’s a cogent argument but insurance underwriters have been making it for a long time and it seems to
have made the case for them.
So in the next few years I predict that there will be a lot more genetic tests in the US, there will be a lot
more genetic discrimination, people will suffer. Eventually enough people will have had a sister or a cousin or an
aunt or a friend who has been denied insurance and there will be a movement to remedy the scheme. But at least
Australia, Canada and the other countries with a functioning universal health system, have a head start. One needs the
same kind of thing with respect to life and disability insurance. I don’t know what the situation here is, the extent to
which people can insure their futures. But in the US this is also a place in which genetic discrimination can be
2000 Templeton Lecture – Philip Kitcher
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practised.
2000 Templeton Lecture – Philip Kitcher
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Q: Is there any serious discussion going on at the implications, deleterious or otherwise, of trans-species nuclear
transplantation?
K: Yes. There is. There are continued discussions. Although it is not directly relevant to my discussion here but this
is another great biomedical issue and it involves some of the same considerations - considerations about safety. I
think that’s the main concern.
Q: To what extent do you think that biotechnology has a problem with the media rather than with its science?
K: That’s a very good question. Your science reporting actually strikes me as rather good. In the US, the principal
high quality newspaper, the New York Times publishes on Tuesdays a science section. I refer to it, and some of my
friends share both the label and the opinion, as ‘the tabloid science’. It starts off always with a “golly gee whiz
we’re going to do such-and-such” but if you read the fine print, at the end of the article, it turns out that there are
complications. Now, the New York Times, along with other American newspapers is a great fan of the locution that
goes: “the -- blank-- gene” (it might be the “thrill-seeking” gene) and it conjures up for the public, an image of
individuals who are condemned by carrying a little bit of DNA, to spend their lives in a perpetual orgy or bungie
jumping or whatever.
So all of those discriminations that I was trying to make - remember the pedantic stuff about the genetic
variation at a particular locus being correlated in such-and-such environments with variations in etc. etc. Well all of
that goes by the board. All the scientists who are reporting to the New York Times know this stuff but it comes across
in this short hand locution and it encourages a sort of mindless genetic determinism. And so people really think that
genetic testing is very important because, after all, our genes determine whether we’re going to get sick or not.
Now, one other thing I didn’t pay much attention to but which perhaps is on your mind is that there is a kind
of myopia, at least in both British and American intellectual circles, about the ways in which molecular research
might go. People don’t see how important it is not only to do molecular biological research but also to do ecological
research on the spread of the various infectious diseases. There is a feeling that infectious disease has really been
conquered. It’s somebody else’s problem and we don’t really have to worry about it any more. It may turn out in the
next century that the biggest payoff from molecular genetics is that, combined with some good work in ecology, it
might help us to prevent a resurgence of infectious disease. It means it may turn out that the history of medicine
looks rather peculiar from the perspective of a few centuries hence. That when people of, say, 2400 look back on our
society they see a bunch of people temporarily worried about various conditions - cancer, diabetes, heart trouble and so forth, because this was a blip in human history when infectious disease wasn’t the major threat to human life.
I mean there are various ways in which I think the American media is responsible for not giving an accurate
picture of what the problems and what the possibilities are, and so forth. I don’t know, so I’m not able to comment on
the Australian case but, as I say, my initial impression is that the reporting has been much better here.
Q: [not audible]
K: Yes, that’s quite possible. You can just hope that the behavioural genetics, which is done under the aegis of
molecular biology, is a lot better than the behavioural genetics which was done in the past. Behavioural genetics is
an incredibly difficult thing to do, as you probably know, and it’s quite likely that, even if these kinds of associations
are recognised, they go s along with other associations which might be unrecognised so you might indeed find that
out. All I can say is that people in biotechnology companies are beginning to think in terms of lots of different types
of genetic tests including behavioural ones and whether they will rush forward to try to get their tests on the market,
or whether they will engage in the kind of painstaking research which would screen out these double (pleiotropic)
effects, I have no idea. This is another reason why I’m haunted by the image of biotechnology in private industry
presiding over this at the moment.
Q: You equate quality of life with satisfaction of temporal desires. But at the moment society doesn’t allow
everybody to satisfy their own sexual desires. Do we have to change society in this respect first?
K: Well there are cases in which that involve matters of social injustice. There are surely people in this country, I
know there are obvious groups of people in the US and in Britain, societies I know very well, in which a history of
injustice and discrimination confines the ability of individuals, even to formulate the kind of plan for their life that
they would like, let alone satisfy it. There are cases in which those kinds of things are traceable to social injustice
and the answer to your question in that case is obvious. The answer is “yes”. There are other cases in which people
don’t get what they want because they are unlucky. Everything we are talking about in terms of the expectation of
2000 Templeton Lecture – Philip Kitcher
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the quality of human life is just that: an “expectation”. But you can look into the future and say “Look, here’s a child
with genetic markers for, say, cystic fibrosis. Now there is a range of conditions associated with that. Some people
live into their forties and they flourish. Other kids are racked with pain from the beginning and they die young.
There aren’t any guarantees in this business but it will be for individuals who get that sort of diagnosis to make their
decisions, on the basis of the best genetic evidence that they have - statistical evidence about the range of
characteristics, and one hopes, in light of what societies can provide for afflicted people in those classes. That’s the
second part of my story: the integration of the genetic work with the social work.
Chairman: I should let you know that this exciting discussion can be continued tomorrow afternoon at the
workshop connected with the Templeton lecture seminar in the Veterinary Science Conference Centre commencing
at 1.30 for 2 pm. So if you’d like to participate further we’d like to see you there. To conclude these proceedings I’d
like to ask Dr Paul Griffiths of the Dept of History and Philosophy of Science to make a few remarks.
Paul Griffiths:
We offer our thanks to all the people responsible for tonight’s fascinating lecture. I’d like to offer our thanks to the
Council of CHAST, the Centre for the Human Aspects of Science and Technology. Over the past ten years many of
you will have been to other Templeton lectures and I think it’s fair to say that the CHAST Council over that decade
has brought us a stellar cast of international and Australian academics. Names like Evelyn Fox-Keller from MIT,
Paul Ehrlich from Stanford, Richard Lewontin from Harvard, amongst the leading academic minds in the world
today. Obviously, we need to offer our thanks to Professor Charles Birch for endowing this very important series of
lectures and most of all to Professor Philip Kitcher for making his way here from New York and delivering this
lecture and giving us insights into a set of issues which every member of our society needs to have an informed
opinion about.
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