Encounter - 18/11/01: Back-door Eugenics http://www.abc.net.au/rn/relig/enc/stories/s438753.

htm

Radio National

on Sunday 18/11/01

Back-door Eugenics

Summary:

Eugenics - or improving the human race - is as old as Plato and Aristotle,

but in the 21st century, humankind is on the verge of reproductive
technologies that make designer babies a real possibility. These new
technologies present humanity with choices that were previously left to
chance.

How are we to make these choices? And what ethical considerations are
we bringing to bear?
Details or Transcript:

ENCOUNTER transcript November 18, 2001

“Back Door eugenics”

MUSIC: J.S. Bach “Magnificats”

REPORTER: De Leroy hood was involved in setting up the human
genome project
PROFESSOR LEROY HOOD: I think it was an achievement that exceeds
any that’s ever happened in the biological and medical sciences. For the
first time a parts list of all the genetic bits that are responsible for the
human being and that parts list gives us the possibility to think about
revolutionary new medicines for preventative and predictive, so the public
has to be educated about and will have to make conscious decisions about
privacy questions of engineering of the germ line questions of genes that
control the human behaviour. These are all consequences of the new
medicine that’s going to come and how society deals with these
opportunities and on the other hand these challenges I think is critical for
the future of mankind.

BILL CLINTON: today we are learning the language in which god created
life. We are gaining ever more awe for the complexity, the beauty work the
wonder of god’s most sacred and divine gift.

JAMES WATSON: The reasons we want to do it is DNA is really our

instruction for human life. Naturally we are curious about what we are as

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human beings. There many reasons people afraid. The basic one is they
think in rearranging DNA you’re taking on God’s work. They think that
you’re sort of upsetting some inherent divine plan.
ROBYN WILLIAMS: maybe there’s some parallel to the way IQ test have
been used - seemingly to have overall answers to what personality might
be like?
We don’t think the DNA is going to give a simple answer to personality,
but it will tell us a lot about ourselves. For instance can you take 2 beers a
day without being an alcoholic so a lot of things we ‘re going to find out
things that a lot of us want to find out

JUSTICE MICHAEL KIRBY: On the human genome it’s a very big issue
there can be few issues bigger than the possible fact that we are on the
brink of a potential change of the human species to some new super
species. Now that’s something we should all be talking about. And we’ve
got to remain optimistic or the alternative is to throw up our hands and
leave it to the scientists to take us where they will. Now that is an
abandonment of the rule of law .

WENDY CARLISLE: Justice Michael Kirby of the High Court of

Australia, James Watson who was one of the co discoverers of DNA, Dr
Leroy Hood one of the leading scientists in the multibillion dollar Human
Genome Project and former US president Bill Clinton

Fifty years since the discovery of DNA, biotechnology is leaping ahead so

fast, it seems like there’s a new discovery every other day. They’ve cloned
Dolly the sheep, and a succession of less celebrated goats and pigs have
followed suit. New life has even been created in a test tube.

The first human clone seems only a matter of time, so to the ability to
genetically modify humans.

At the moment all the talk is about how inheritable disease genes can be
identified.

But in the future, we may be able to enhance ourselves genetically, give

ourselves a little boost – a few extra IQ points or even blue eyes.

Some say we should be honest and call this new science by its real name.
Eugenics.

Dan Wikler was formerly senior ethicist at the World Health Organisation.
He’s professor of bioethics at the University of Wisconsin

Wendy: you accept as a premise the future of human beings genetically

enhanced is inevitable.

DAN WIKLER: Yeah, I mean we don’t know which traits will be

enhanced. Just starting with intelligence say. There’s been some reports
this week on scans of brains indicating that people who have scored very

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high on intelligence tests show an anatomically larger region that seems to

be very possibly under genetic control but we really don’t know. There
will certainly be some traits; no one has any difficulty admitting physical
traits like height are strongly influenced by genes obviously. So once we
have these choices and these powers and the idea that people will simply
sit there and not use them is not credible.

WENDY CARLISLE: this is what we get to the idea of eugenics. What we

are talking about here is eugenics of the future. The genetic engineering
powers that science is now offering us.

DAN WIKLER: It all depends on what you mean by eugenics. For some
people eugenics it literally means action on behalf of the state to regulate
the gene pool. Now in the immediate future it doesn’t seem likely at least
in the countries that you and I come from, that this sort of action by the
state so what we would be more likely see is something that the sociologist
Troy Donohue calls I backdoor eugenics.

WENDY CARLISLE: Which is what?

DAN WIKLER: Which is individual parents making choices offered to

them, perhaps in the market place perhaps by individual clinicians in
pursuit of the kind of baby they want

WENDY CARLISLE: and so this is the eugenics of individual choice as

opposed to brave new world of Aldus Huxley and Hitler

DAN WIKLER: that’s right so if you have the state sating this is the kind
of human being we want and basically ordering people to change their
reproductive behaviour or make certain choices in the process of genetic
counselling then that would be old fashioned state eugenics. And this
backdoor eugenics that Duster wrote about is something is a kind of
pattern that emerges not from any dictators decision or central government
decision but from the cumulative effect of many individuals decisions that
are not thinking about the gene pool, the point is that individuals are just
thinking what kind of baby do I want. But when you put all those choices
together in a limited period of time in a single country you have an effect
on the gene pool and so you get eugenics through the back door.

WENDY CARLISLE: Professor Dan Wikler.

Everyone realises that the new technology comes with big ethical
dilemmas. But what most don’t realise is that these aren’t dilemmas of the
future, the technology is already here.

In clinics around the world, doctors are already able to provide screening
tests that tell us things about the unborn we’d never dreamed of.

Soon we may be able to test for intelligence, musicality, and deviance. But
we can already identify spina bifida, muscular disorders, cystic fibrosis,
Down syndrome, dwarfism, cleft palette, even twisted feet.

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And with that knowledge comes the choice about whether to continue with
the pregnancy

Dr Andrew McLennan is a consulting obstetrician and gynaecologist with

a large private practice in Sydney.

DR ANDREW MCLENNAN: These are later images.

WENDY CARLISLE: What are these ones we are seeing here?
DR ANDREW MCLENNAN Dr McLennan: these are images relating to
an 18-week scan. Because there are a number of ways you can screen for
down syndrome, the most efficient …looking at theta image. That’s
12-week foetus lying on its back sliced in half by the ultra sound beam.
Can see the head face and looking up through its hand there. This is the
body here and this black space here is some fluid between the skin and the
muscles at the back of the neck and that’s a normal part of development.
Every baby has that fluid, but babies with Down Syndrom tend to have
problems with their hearts or the blood flow to the head and neck so they
collect more fluid in that space. The bigger the fluid measurement the
higher the risk for a chromosome problem.
WENDY CARLISLE: that looks quite..
DR ANDREW MCLENNAN: yeah that’s quite prominent
WENDY CARLISLE: and that in your view would be a baby with Down
Sydnrome?
DR ANDREW MCLENNAN: no that would be a bay at higher risk of
having downs syndrome

DNA AD: In the not too distant future our DNA will determine everything
about us. A minute drop of blood, saliva or a single hair determines where
you can work, who you should marry..

DR ANDREW MCLENNAN: .I think too many people turn up for these

tests assuming they’re going to get a cute picture of their baby and that b
everything is going to be fine not thought about it beyond that point. Now
95% of the time that’s going to be the case, they’re going to get a cute
picture the baby is going to look lovely and we’re going to give them a low
risk for a chromosome problem. The 5% that turn up with increased risk
will handle it in variety of ways. Because so many of them haven’t thought
it through. It’s not a photo opportunity if you’re a high risk will force you
into some sort of choice between doing some more invasive tests. If you
have those tests you’ll be forced into considering whether you’ll continue
the pregnancy or not.
WENDY CARLISLE: that’s what it comes down to?
DR ANDREW MCLENNAN: and that’s what it’s going to come down to.
We can’t fix any of these chromosomal abnormalities. They occur in every
cell there is no way of making that better nor is there any way – as I said
before – of identifying which of those babies is going to end up which end
of the ability spectrum

WENDY CARLISLE: Soon we are going to be faced with even more

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awesome technologies which will pose even bigger dilemma’s – such as

whether it’s permissible to select, delete or flush away embryo’s that don’t
fit our ideas of normality or what’s acceptable. The purpose of this
program is not to argue against the right to have an abortion. But we are
failing to confront the fact that scientific change is now moving at such a
pace that designer babies are just around the corner.

Michelle Barker is a lecturer in the school of art at the University of New

South Wales. And she’s made a CD ROM called the “Preternatural” –
about the cultural construction of the monster in western history. And she
says our ideas about ideas of the monstrous and of human deformity have
always been shaped by scientific change.

MICHELLE BARKER: This is the more historical area called hear, see
speak. Which is about the Notions that came up from 17th century like the
myths associated with the monstrous and exploring difference between
what was happening in the 17th, 18th and 19th centuries
Wendy Carlisle: what’s this story we’re seeing here?
Michelle Barker: well this one about people who were born half human
and half animal, and this assumption that that obviously means that person
was having sex with a dog and they’re weird sodomists or whatever.
Whereas this one here is about conjoined twins and kind of interestingly
talks about they grow displeased and melancholy at seeing themselves so
repugnant to everyone, so their life is broef.and you know these were the
medical accounts of the day. This is an Interesting one from a Doctor –
again of conjoined twins with two heads – and this doctor was quite happy
to say this monster was in his house and kept as a museum piece. People
were becoming very interested in what it meant, it was an age more than
any other I think that people weren’t so much repugnant but they felt an
interest in it. And this was reflected in what was happening in medicine
and science. Which is why the notion of monstrous becomes a very
interesting way of talking about what’s happening in medicine and science.
Because if you just look at what’s happening at the moment we have this
idea of genetic screening which is sort of phasing it out and this is very
much reflected in how we don’t want to see anything that’s different. I
think there’s a fear of difference. Particularly corporeal difference.

WENDY CARLISLE: Michelle Barker. Mark Frankel has just written a

report on the ethical, social, legal and theological implications of human
genetic modification for the American Association for the Advancement of
Science.

MARK FRANKEL: you have to begin with what standards of normality

exist in society today. I mean to what extent do we as a society accept
“deficiencies’ will we be able to detect potential defects ahead of time that
would allow us to say well that’s an embryo that shouldn’t go forward
because it’s highly likely that he or she will have physical or mental
problems and that doesn’t fit our new definition or understanding of what
normality is.

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WENDY CARLISLE: so in other words that embryo gets aborted …

MARK FRANKEL: …well it gets discarded, it never gets implanted.

MUSIC: CHILDREN OF THE REVOLUTION

KIRINA STAMMEL: I think it tests the boundaries of what it is to be

human and that’s a hugely vital and important thing to do. In some ways
it’s like and art work and in fact it holds a mirror to everyone else. And in
fact if we look to Toulouse Lautrec and other short statured individual who
created beautiful art - well I wouldn’t say necessarily because of his
disability – but his disability and difference gave him a different
perspective to his parents who had lived in a fairly upper class society and
had never really been unaccepted.

WENDY CARLISLE: It’s interesting that you brought up Toulouse

Lautrec. I think I’m right in saying you were an actor in the film Moulin
Rouge?

KIRINA STAMMEL: yep

WENDY CARLISLE: what was your role?

KIRINA STAMMEL: um I played la petite princess, so the little princess

um yeah that was great.

Wendy Carlisle : well let’s go back to the Moulin Rouge because I’m
interested to hear from you how the actors who played – there was a
couple of other people of short stature in that film too, Toulouse Lautrec
being one of them. What was the sort of cultural feeling about people of
difference at that time? How were they viewed by the other people in that
artistic community?

KIRINA STAMMEL : I think its actually a really intresting question

because my character actually developed during the making of the film. I
kind of made up a little history for herself because she wasn’t in the
original script and basically in some ways she would have been incredibly
tragic. The Moulin Rouge would have been the only place she would have
been able to find employment um and in some way she would have been
protected there even though she was working in a world of prostitutes and
as a side show act in many ways, which in some ways is tragic but at the
same time she would have found a place she was slightly empowered but
its difficult because during the early 1900’s which is sort of towards that
kind of era that you had the development of a lot of side shows and theme
parks, light bulbs and that kind of thing and you had Coney island in
America, and difference and disability and freaks – I’ll use that term again
in inverted comma’s – were really sort of employed to be looked at and
objectified. And they were kind of framed within the sort of context of the
sideshow and the theme park and all that sort of thing. And looking at that

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now I kind of think how horrible, isn’t that awful that the only place they
could find acceptance was within the spectacle at the same time they
would have found some acceptance within that community.

WENDY CARLISLE: Actor and student, Kirina Stammel.

You’re listening to Encounter on Radio National and a program about the

ethical implications of human genetic engineering.

Here’s Anglican priest Dr Chris Newell, who lectures in bio-ethics at the

University of Tasmanian

CHRIS NEWALL: We’ve shifted to now talking about deviant and

fundamentally disabled genes and embryo’s. I think 30 years ago it was
much more the site of debate was women’s bodies and I think it’s now
disabled genes and embryo’s and this in a social context where you’re
better of dead than disabled and thank god I don’t have a disability.
They’re the dominant constructs that are used.

WENDY CARLISLE: The new biotechnology presents special ethical

issues for feminists, who for thirty years have talked about a woman’s right
to choose as civil rights one, rather than an ethical one.

But the new genetic technologies have the potential to change all that.
These new choices are about what kind of baby, not whether abortion is
legal.

So to talk about this I invited a long time abortion rights campaigner,

Beatrice Faust who was also a founding member of the Women’s Electoral
Lobby, and Doctor Helen Pringle who teaches politics at the University of
NSW to discuss the issues.

BEATRICE FAUST. Women do not terminate on the basis of the criteria

for the perfect child, they terminate on a whole range of ethical
considerations that relate to the family, on the effect on the family, the
effect on the marriage and their won lives and consideration of the possible
suffering of the child if it’s born.
This business about people having a wish list for the perfect child – I don’t
say there aren’t people like that – but it is like the old challenge the
conservatives used to put up. Women only have abortions because they
want to preserve their figures. It is underestimating the ethical stature of
women
HELEN PRINGLE: I’m not sure that’s the Question though Beatrice.
I think 30 years ago women and men people were more concerned about
the legality of abortion and I really think that’s what’s has changed and
that’s not where the most important or the most interesting or urgent
debates are these days. Today I really think the terms of the debate have
shifted to the sorts of things Beatrice just mentioned which are more

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ethical Questions about abortion. Now that the right to abortion has been
established in law, what we really need to be talking about now is how that
right should be exercised. At that raises, it’s a different debate and it
should be conducted in different terms. Not in terms of telling people what
choices they should make but of changing a little bit the context. People
for example don’t automatically think that a test, which comes back, a
certain way automatically means they should have an abortion. It’s
changed from being a more legal to a more ethical debate
WENDY CARLISLE: if we look to the future when we know a lot more
about the genetic makeup of us, what Beatrice are the limits to the choices,
which we can ethically take about the unborn. If we find genes for
intelligence, for musical ability, for eye colour, should people be able to
have choices based on those kinds of results?

BEATRICE FAUST I think the number of people who will look for those
choices is fairly limited and partly limited by money. I think the business
of people going for eye colour is a bit of a beat up in real life…
WENDY CARLISLE: well what about on the basis of sex?
BEATRICE FAUST: well that’s another offensive one which is already
going on, this is not the future. China is already going to face the future of
men without women because of its abortions and India is also heading in
that direction
WENDY CARLISLE well I hope you’re right when you say it’s a beat-up
and we won’t be given the opportunity to chose on the basis of eye colour
and so on…
BEATRICE FAUST: sweetie I didn’t say that. I said I don’t think human
beings are all vile…
WENDY CARLISLE: No I think we’re human …
BEATRICE FAUST: there are a few maniacs who want pink poodles and
you know large diamonds on their toes…
WENDY CARLISLE: but I do think it’s worth pursuing this idea of where
in the future it looks as if these tests will be available. James Watson who
discovered the DNA is saying these things are going to be possible. Do
you think it should be permissible to choose a child on genetic qualities,
non-medical qualities as well as medical. Is that within the realm of a
woman’s right to choose?
BEATRICE FAUST: I personally would limit it and I can’t think of a way
to limit it …
WENDY CARLISLE: How do we do it?
BEATRICE FAUST: well I thought of for instance withdrawing medical
rebates but that would discriminate against the poor. Why should the rich
be foolish and the poor not allowed to be foolish. Perhaps Chris or Helen?
WENDY CARLISLE: But what if a woman says its her right to choose to
do that. If the market is delivering that and she as a consumer can buy that,
what from your perspective what’s stopping her doing this?
BEATRICE FAUST: at preset the only thing that stops her doing it is
money and availability. But one could argue that type of choice has
nothing to do with feminism.

WENDY CARLISLE: Beatrice Faust – feminist and writer with Dr Helen

Pringle from the University of NSW.

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You’re listening to Encounter on Radio National and a program about the

ethical implications of human genetic engineering.

Dr Leslie Cannold is the author of the ‘The Abortion Myth’. Her view is
that in the real world of women’s lives, concerns about designer babies are
far-fetched.

DR LESLIE CANNOLD: I feel that at the moment there’s a bit more focus
on it that probably is justified and that’s because most people are going to
continue to have babies the old fashioned way and therefore what they’re
going to need to do if they want to find something out about the genetic
makeup of the child before its born is that they are going to need to use a
diagnostic test. So people involved in IVF and perhaps people who get
involved in Pre-implantation diagnosis those are a smaller group who are
and may continue to use those technologies. The burden is on those people
who want to suggest that these decisions oughtn’t be made available to the
individual couples that are making them and they oughtn’t to be made
available because people don’t understand the moral implications and they
can’t be trusted to make those decisions. And I haven’t seen any evidence
that would lead me to believe that that was the case. And therefore I
tentatively suppose that it should be all right until I see what kind of
decisions they make and how they go about making them. I think if we
ended up in a situation where we found people were making decisions in
fairly careless and thoughtless ways and we were feeling very
uncomfortable that they didn’t understand the seriousness of these
decisions - and I do believe that they are serious – then perhaps we would
need to go forward and say we can’t leave these decisions in the hands of
people.

MICHELLE BARKER: Okay this section is called the cybernetic cell and
it’s the most contemporary one, it’s actually a survey I constructed around
people’s beliefs about genetics at the moment. So it’s pseudo fertility
clinic, people have to answer a whole lot of questions and they don’t
actually realise it but they are actually being scored on those questions to
determine if they are appropriate for breeding and to find a match for
them. The questions – a lot of them are very tongue in cheek but they are
basically like how people would answer questions about abnormality and
how they would .and a lot of it comes from doing research at IVF clinics to
find out what they people actually want when they are wanting a baby. It’s
quite interesting, if I ever show this part in a lecture I get someone else to
answer the questions and they get quite caught up in it and think ‘oh my
god, what’s the right answer here’ sort of missing the tongue in cheek ness
which is quite interesting.

WENDY CARLISLE: Michelle Barker. Julian Savulescu is editor of the

Journal of Medical ethics, he’s professor of Medical Ethics at the Murdoch
Children’s research Institute at the University of Melbourne.

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PROFESSOR JULIAN SAVULESCU: well I think it’s misleading to call

those sorts of private choices eugenics. When you talk about it at the
individual level your talking about a couple making a decision about
having a child that they believe has the best opportunities at the beginning
of life and that’s essentially what prenatal testing is.
WENDY CARLISLE: but it is another step to say it is morally acceptable
to say design your own baby based on non medical attributes – eye colour
and how you get on with people, and temperament, and musical ability. It’s
the ultimate in human liberty, individualism.
PROFESSOR JULIAN SAVULESCU: Well it is. To give you one example
there is a family from the Netherlands who has been identified by a Dutch
geneticist who had a very high incidence in 50% of the males of criminal
behaviour involving violent crime, robbery, arson and the family was
brought forward by a maternal grandfather who couldn’t understand why
half the males seemed to engage in this criminal behaviour and the other
half were completely normal. They started to look at the genetics of this
family they found a mutation on the X chromosome of those males who
engaged in the behaviour. Now when they looked further they found an
abnormality in one of the genes, which codes for one of the enzymes in the
brain. And there was a plausible story of a link between this genetic
abnormality and the violent behaviour. Now here we have a clear cut
example of a non disease gene which is resulting in a certain kind of social
behaviour that people would generally agree is undesirable both for society
and the individual and a gene which the family themselves is concerned
about. It doesn’t to me seem anything problematic about testing for this
gene in this family and allowing those members of the family at risk of
passing on this x linked gene to their sons of having a genetic test and
selecting a child which is not going to have this gene and engage in violent
criminal acts and end up in jail.
We can socially theorise as much as we like, talk about higher order
abstract theories and what should and shouldn’t be done. But at the end of
the day it’s Betty and Jane- -I mean Betty and John that have to look after
their child
WENDY CARLISLE: ha, ha could be Betty and Jane too…
JULIAN SAVULESCU: …well maybe betty and Jane in some states in
Australia, who look after their child and it should be up to them when they
have children, how many and what sorts of children not up to other people
and society and their own pet theory. Of course if it was the case that
everyone in the society was choosing genetically identical children that
would be a terrible thing, and yes at that point we should intervene in the
freedom of choice if for some reason it was that severe and likewise we
had genes for height, as plausibly we will be able to in the future.
The argument goes well won’t everyone want to have a child that’s 6’5.
there’s evidence that taller people are more attractive, have better
employment opportunities etc I don’t think that by giving people freedom
of choice we’re going to end up with a race of people 6’5”. I personally
would prefer to have a child that’s 5’11 because that’s about ideal for doing
the things I enjoy like surfing and skiing…I don’t want my child to be
basketballer, but other people would
WENDY CARLISLE: Indulge me for a second and tell me what you
would design into your child, if you could.

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JULIAN SAVULESCU: well the sorts of things obviously working in a

university and engaging in argument I’d like to have argument with my
child at a level we both get something from those discussions. I’d like to
be able to share the physical pursuits that I enjoy. I don’t have much love
or appreciation for music I personally wouldn’t be looking for musical
genes.
WENDY CARLISLE: so you’d be going sporty..
JULIAN SAVULESCU: well I would be leaving some of to chance and
some looking to make sure that a child with a serious physical abnormality,
if I had the opportunity to select against that chance, I would.

WENDY CARLISLE: Professor Julian Savulescu from the Murdoch

Children’s research Institute in Melbourne.
Well if Julian Savulescu’s ideal baby seems uncannily like himself, Mark
Frankel says genetically engineered babies could fundamentally alter the
relationship between parents and children.

MARK FRANKEL: When a couple becomes pregnant they know they are
expecting a child, they don’t know they are expecting a particular child,
whereas in the future they may be able to design an embryo ion such a way
that once its implanted and grows they will have specific expectations
about that child. That he or she will be stronger, more athletic, intelligent,
whatever the case might be. If there
‘s a failure along the way and this doesn’t happen one has to raise issue of
how that parent will view that child given that it now might not live up to
expectations.

WENDY CARLISLE: so you’re talking there almost about a danger of

imposing some sort of conditionality on the love that a parent might feel
for the child?

MARK FRANKEL :I think if you have expectations and you have an

embryo growing in side you and you expect it to a particular kind of child I
think it would be very normal to have some disappointment if the child
doesn’t meet those expectations. Or to have greater expectations than are
warranted because of what you think that child will turn out to be.

WENDY CARLISLE: Mark Frankel- author of a report on the ethical,

social and religious implications of the new technologies for the American
Association for the Advancement of Science.
Former chief ethicist with the World Health Organisation, Professor Dan
Wikler.

WENDY CARLISLE: What then should government’s do here? If the

technology gets to the point where we can genetically modify some
children so that they are not disabled, should government’s have a role
there in ensuring some kind of bare minimum?
DAN WIKLER: Well that was the second question that I actually wanted
to turn to. The first question is what should we permit and the second one
is what should we enable. Suppose that someone does discover a gene that

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creates a child who is taller or more intelligent or beautiful or more

musical for that matter, ah should this be part of the national health plan?
The parents who have the means are certainly going to rush out and avail
themselves of it. Now this of course assumes there’s an easy painless way
to make use of these techniques. If everybody has to go through IVF a lot
of people won’t want to do it. There’s a lot more pleasant way of creating a
baby than that. Some parents who have the means and place enough
importance on having these wonderful traits in their children will forgo the
natural ways of having children and will have a child which is sort of born
in the test tube on the condition of being assured they are going to have a
spectacular child.
Now suppose it’s the wealthy parents rush out and get this and now
everyone else stands by and says what about us?
Some sci fiction oriented scientists are saying what we have is a real risk
here. What we now have social class divisions between rich and poor
would actually turn into biological divisions especially if you could
engineer the germ line, actually affect the cells that are reproductive you
might be able to engineer changes that were reproduced in the next
generation and over time the children who had these opportunities for
more desirable genes – if I could put it that way - would start to diverge
biologically and perhaps even conceivably in the distant future into a
different species but in any case you’d start to see real social class
differences the way you did on South Africa where you notice the people
with control were all coloured white and the ones who were dominated
were all coloured dark. So in this case you’d see actual biological
differences that would in away confirm some of the fantasies of racists in
the past.

WENDY CARLISLE: And you’re saying that sort of thing shouldn’t be

allowed?

DAN WIKLER: Well I think in that case we’re looking at social

dislocations and disadvantages from individual choices that are
undesirable. There are several ways to address this. One would be to
abandon this kind of advantage seeking behaviour. But that’s hard to do;
we do it in so many other ways. And the 2nd thing is that if it’s good for
them maybe it’s good for the others who want this. And so to make these
opportunities available to other people. Now the idea that there should be
some sort of social investment that would allow people who couldn’t
afford these enhancements to buy them at social expense strikes a lot of
people as odd, actually worse than odd, perverse but there’s a rationale for
it.

WENDY CARLISLE: Yes, there was a fascinating article by Martha

Nussbaum in New Republic about your book “From Chance to Choice” in
which she asked: “How do you promote equality of opportunity if some
can engineer their children better than others?
DAN WIKLER: Right. Exactly, yes. And so the tendency we find among
people who are shooting from the hip is well let’s ban all of this. But this is
not the only approach if you’re interested in Equal opportunity, you can
help others to do it.

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WENDY CARLISLE: Professor Dan Wikler, former senior ethicist at the

World Health Organisation. What then are we to make of these issues?
Here in Australia the Australian Law Reform Commission is examining
the legal issues associated with human genetic engineering. Meanwhile in
the United States, there’s the added concern that the private sector could be
working on human genetic engineering and no-one would know.

Mark Frankel again.

MARK FRANKEL: They are not governed by any social or ethical norms
in place and supported by government and society which would put
constrains on what they can and can’t do. So we’re concerned about these
matters, not only about research and implications in IF clinics that are
going on. They’re basically experiments. This is science that has not been
tested in any clinical trial so every infertile couple that goes in for some of
these procedures is in a sense is a human research subject.

WENDY CARLISLE: So you obviously cant stop the private sector here
but you’re arguing then that the government should play a bigger role in
this science?

MARK FRANKEL: The govt should play a bigger role in exploring the
science and the ethical issues associated with it and should exercise greater
oversight of the private sector. I mean we make it clear that we don’t
believe that any effort in human inheritable modification should go
forward. Period.

WENDY CARLISLE: So did government listen to you when you said no,
this science should not proceed right now.
MARK FRANKEL: well certainly the government level yes, but the
private sector has ignored us. The governing bodies within the government
the federal Drug Administration and our National Institute of Health have
reasserted their authority over this technology and are making whatever
effort they can to constrain the applications of this tech in private sector to
the extent the law allows them to do so.
WENDY CARLISLE: but what you’re saying here is that government has
got no ability to ban this research in the private sector.
MARK FRANKEL: No, that’s absolutely true. What they can do in certain
circumstances is try to exercise quality control and oversight but they have
no authority to ban. Some talk about legislation in congress last spring, and
that has not gotten very far but that may have more to do with the fact that
in America we’re dealing with other kinds of issues.
WENDY CARLISLE: So in the meantime in some laboratory in the states
somewhere scientists are beavering way on science that could lead to
genetic modification of human beings?
MARK FRANKEL: Well there’s no doubt it’s going on in animals. There’s
no doubt about that. Whether its going on in human beings beyond IF
clinics that I don’t know
WENDY CARLISLE: And it could be happening?

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MARK FRANKEL: it could well be happening - we don’t know - because

these things are not monitored. You know it’s questionable whether there is
any requirement that anybody report anything to anybody.

WENDY CARLISLE: Mark Frankel.

In Australia, experimentation in human genetics is funded by government
and governed by medical ethics bodies. But without any real consensus or
public debate on the issues, it’s left up to doctors to define their own
boundaries.

Dr Andrew McLennan.

WENDY CARLISLE: What about in the future if it’s testing for

non-medical conditions?
ANDREW MCLENNAN: That will get more and more difficult and I
guess each of us as practitioners may eventually have to draw a line where
we feel comfortable giving this information. But there are certain elements
to this that in your conscience you can’t go forward with and in that case
you have to say I can’t help you, but I know who can, and there will be
other people who will feel less uncomfortable with those issues and who
can help you.
WENDY CARLISLE: One of the other issues that come up when we are
talking about the future world of testing for medical as well as
non-medical conditions is this idea of Eugenics – of trying to improve the
human race. Is eugenics a useful term when we are talking about the future
of reproductive diagnostic technologies?
ANDREW MCLENNAN: I’m glad you phrased the question that way. It’s
a dreadful term, an enormously pejorative term with awful implications
I think we practice eugenics every day I just don’t like to use that term but
there’s no doubt that Down syndrome screening I’m practicing eugenics, in
a population sense. You know half the wheat we eat has been mucked
around with significantly bits and pieces of things pulled out of it and put
into it to improve it. Now you know the whole food genetics thing is a
precursor to what we will have in medicine.

PETER GARRETT: It was the singer stroke songwriter Bob Dylan who at
one of his most outwardly religious stages wrote: You got to serve
somebody. And this was a very succinct statement of a central biblical
theme. He was implying that you cannot live fully if the only thing you are
living for is yourself. And later on in a reflective voice he re-surveyed the
moral landscape in later albums like ‘Oh Mercy’ – where he wrote a song
where the line was: There’s a diseases of conceit. And the diseases of
conceit are a familiar notion from the biblical tradition that goes along
with its partner diseases of hubris, idolatry and faithlessness. And at the
same time as this yearning for spirit is very evident in the music – and I
can hear it everywhere – there is a parallel universe where emotion and
yearning and spirit are completely absent. Where its claimed that mystic
values are of no worth at all. This is the universe where the laboratory
rules. Hence there’s no shortage of scientists and economists who now
adventurously proclaim we are on the verge of a new creation. As the
writer Jeremy Rifkin puts it: That the laboratory conceives genesis. And

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this is in the offing as the new technologies of genetic engineering

manifest themselves in a way that the science fiction that described them
as very dull and unimaginative. Unlike our response to the environment or
to the drug problem our responses to technology and genetic manipulation
has been largely muted. And yet the future will be irreversibly determined
by our responses, our now responses. The whole of earth’s lifecycle, the
whole of the interrelations between the organisms and species and
ecosystems. All of those relationships are subject to the most powerful
technology imaginable. Man now consciously gets to play god and the old
faiths are challenged as never before. Let me quote: Dr Robert Sinsheimer
eminent molecular biologist. He says ‘for the horizons of the new eugenics
are in principle boundless for we should have the potential to create new
genes and new qualities yet undreamed. At its core the new technologies
when they deal with reproduction when they expressly allow for the
eliminating or altering of genetic characteristics at the level of procreation
is a new variant of eugenics. And as you know eugenics is defined as the
science of improving the qualities of the human race. The same mission
that the Third Reich was committed to and which in any form inevitably
involves an arbitrary selection of certain kinds of people of certain
characteristics – short people, disabled people, Jewish people, outspoken
people who must be remade and remodelled to the desirability of the
scientists who have the technology.

WENDY CARLISLE: That’s the voice of rock star environmentalist Peter

Garrett. And you’ve been listening to Encounter on Radio National.
Production this week: Ann-Marie Debettencor. I’m Wendy Carlisle see you
next time.

Encounter is broadcast on Sunday at 7.10am, repeated Wednesday at

7.10pm, on Radio National, the Australian Broadcasting Corporation's
national radio network of ideas.

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