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 labeled 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 labeled ‘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

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