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ISIS
Special Series, Inside Human Genetics and Genomics, Part III
The
Silenced Targets
Amidst the
claims of gene and nanotechnology to fix perceived disabilities,
impairments and diseases and to eliminate world hunger, Dr.
Gregor Wolbring looks critically at issues of decision-making
and control, raising key questions. Who decides what is good for
humankind? Who shapes research agendas and government policies?
Who decides what needs fixing? Can we draw a line between technologies
if they are based on the same societal philosophy?
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The justification
for GM food is that it will end world hunger. But countries where
hunger is prevalent are typically excluded from the debate. Furthermore,
the question is never raised as to whether there should be a technological
fix instead of a more appropriate societal solution.
In the same
way, a major justification for advancing human applications of gene
technology is the prevention of suffering, disabilities, diseases
and gene ‘defects’, including Down’s syndrome. Yet, people with
Down’s syndrome did not demand predictive tests to prevent the birth
of people with Down’s syndrome. But no one has asked for their opinion;
they are treated as objects in justifying the use and development
of gene technology. Is Down’s syndrome a medical or societal problem
requiring a medical or societal solution? Down’s syndrome people
see themselves as different, not as a disease.
The community
of the ‘disabled’ argues that testing for disabilities, diseases
and impairments will increase prejudice against people who are labelled
as such. How do other targeted groups feel? Many argue that sex
selection lowers the status of women, while selection of sexual
orientation would contribute to discrimination against lesbians,
gay men and bisexuals.
If the danger
of increased prejudice is real for sex and sexual orientation, then
this danger is just as real for ‘disability’. As Andrew Brown of
Amnesty International says, in discussing Down’s syndrome, "if society
regards the presence of such disease as an acceptable reason for
aborting a foetus, this makes it harder to preserve equality of
respect for those already born".
With gene/nanotechnology
threatening to redefine what it means to be human and which characteristics
are desirable, one assumes that a broad coalition would form between
the groups/individuals viewed as having unwanted characteristics.
They would collectively question the dynamics by which some characteristics
are labelled ‘unwanted’ and the preference for medical solutions,
i.e. predictive testing and subsequent cure or termination. Unfortunately,
an ‘animal farm’ philosophy seems to prevail, where ‘some are more
equal than others’.
Frameworks are
developed that allow some groups to question ‘unwanted’ labels and
allow some ‘unwanted characteristics’ to be excluded from medical
solutions, but simultaneously deny other groups the same arguments.
This makes a broad alliance impossible, as different groups/individuals
will be in direct conflict of interest.
This animal
farm philosophy assumes that we can draw the line somewhere whenever
the issue of predictive testing and option of cure or termination
arise. But can a line be drawn?
Bob Williamson,
director of the Murdoch Institute for Research into Birth Defects
and Professor of Medical Genetics at Melbourne University, argues
that no distinction can be made between disabilities. Eugenic decisions
stem from socio-economic context and personal or family circumstances,
not from the disability or disease or gene ‘defect’. Decisions leading
to sex de-selection and sexual orientation de-selection should also
be seen in the same light.
Once pre-birth
eugenic solutions are established for a certain characteristic,
this opens the door to after-birth eugenic measures such as infanticide,
DNR (‘Do Not Resuscitate’) and euthanasia on people living with
the ‘undesirable’ characteristic, particularly in countries that
can’t afford the technologies.
As philosopher
Peter Singer says "…most of those NOT opposed to abortion have drawn
a sharp line at birth. If, as I have argued, that line does not
mark a sudden change in the status of the fetus, then there appear
to be only two possibilities: oppose abortion, or allow infanticide".
Another distinction
usually made is between genetic de-selection (negative eugenics)
and genetic enhancement (positive eugenics). Robert Edwards, creator
of the first test tube baby, predicts that the increasing availability
of prenatal screening for genetic diseases gives parents a moral
responsibility not to have disabled children. "Soon it will be a
sin of parents to have a child that carries the heavy burden of
genetic disease. We are entering a world where we have to consider
the quality of our children". If parents are obliged to consider
the quality of their children, won’t this mean that they also have
to enhance the genes of their children if these improve the children’s
quality of life?
And if we believe
in biological eugenics, then gene therapy, sold as one of the ultimate
goals of gene technology, is its extension. If we believe that a
certain characteristic is to be avoided, it becomes hard to say
"No" to gene therapy, which seems to have two advantages over de-selection.
They relieve women from the ordeal of abortion or in vitro fertilization
(IVF). ‘Defective’ characteristics can be cured in utero or later
in the child, giving the child a choice.
It is usual
to distinguish between somatic and germ line gene therapy. Somatic
gene therapy fixes a ‘defective’ gene in cells other than egg and
sperm, by delivering a ‘non-defective’ gene to the target cell.
Changes are not passed on to children. Germ line gene therapy includes
genetic changes in reproductive cells. This altered genetic make-up
would be passed on to children.
Some people
feel they can draw a line between somatic and germ line gene therapies,
allowing the former and prohibiting the latter, because the consequences
of somatic gene therapy are confined to the person whereas germ
line gene therapy can affect future generations. However, there
are many problems with this distinction, not the least of which
being that it can’t be guaranteed that somatic gene therapy does
not modify reproductive cells. Germ line gene therapy might work
in some cases where somatic gene therapy doesn’t. Germ line gene
therapy might seem more cost effective because it fixes the problem
irrevocably, whereas with somatic gene therapy the same ‘defect’
might occur in offspring. Finally, justifications for somatic gene
therapy are based on fallacious assumptions that it is acceptable
for individuals to put themselves at risk, and not the population.
But if somatic
gene therapy does not work but germ line gene therapy does, can
we oppose the latter, which is good for the population? And if somatic
gene therapy is safe, can we see germ line gene therapy as unsafe?
I don’t think so.
Although the
current debate is centred on genetic ‘defects’, the same principles
apply to non-genetic characteristics. Ultrasound is routinely used
during pregnancy, and can detect, for example, cleft palate. A study
in Israel revealed an abortion rate, after detection for cleft palate,
of 95.8%. In the UK, the annual birthrate for babies with cleft
lip decreased between 1982-1992 from 820 to 464 births, and the
birth of babies with Talipes (crooked legs) decreased from 2041
to 747 births per year. A study that investigated the use of prenatal
ultrasound to detect heart defects in 12 European counties found
that the termination rate for this ‘defect’ ranges from 3.1% to
70%, depending on country.
And the same
arguments go towards non-genetic enhancements. Nanotechnology currently
promises a lot. Applications for enhancing the performance of the
human body are similar to gene technology in scope and philosophy.
It is seen as contributing to " a wide range of assistive solutions…"
The end result
of going down this road is that de-selection of characteristics
judged unwanted by societies (negative eugenics) will be viewed
as ‘the right, responsible, moral thing to do’, as will cures and
enhancements.
One study found
that because of pressure from hospital staff, one in four pregnant
women underwent amniocentesis. Of those whose fetus tested positive
for a birth defect, one in three believed she was more or less forced
to have an abortion.
In another study,
more than 50% of professionals involved in decision-making and offering
of genetic tests in 19 countries, 55% of US primary care physicians
and 44% of US patients agreed with the statement, "It is socially
irresponsible knowingly to bring an infant with a serious genetic
disorder into the world in an era of prenatal diagnosis". The majority
of the said professionals in 24 countries and 40% in USA and Canada
also agreed that "it is unfair to the child to be born with a disability".
It follows,
therefore, that it is considered irresponsible not to provide your
child with a cure. If parents are obliged to consider the quality
of their children and if it is irresponsible to have a child with
a disability, wouldn’t parents be obliged to add ‘advantageous’
genes to their children’s genetic make-up? Wouldn’t parents be obliged
to give their child non-genetic cures? Wouldn’t parents be obliged
to give their children (who fit the norm) genetic and non-genetic
enhancements (to better the norm)? Why should only parents with
a ‘below the norm’ child be obliged to bring their child ‘up to
’ the norm?
Dr. Gregor
Wolbring is Biochemist at the University of Calgary and Adjunct
Assistant Professor for bioethical issues in the Dept. of Community
Rehabilitation and Disability Studies. He is Founder and Coordinator
of the International Network on Bioethics and Disability, which
examines how issues such as biotechnology, nanotechnology and euthanasia
affect marginalized groups. To subscribe, go to www.yahoogroups/subscribe/Bioethics
or send a blank e-mail to bioethics-subscribe@yahoogroups.com, webpage:
http://www.thalidomide.ca/gwolbring
This article can be found on the I-SIS website at
http://cgi.isisnet.force9.co.uk/cgi-bin/SilencedTargets.php
The Institute of Science in Society
www.i-sis.org
PO Box 32097,
London NW1 OXR
Tel: 44-20-8731-7714
44-20-7383-3376
44-20-7272-5636
This may be
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