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The following document was originally produced for consultation and discussion and was approved by UKDPC's National Council in February 2000.
The issues around clinical genetics and genetic research have given rise to an ethical and moral minefield. However, disabled people can offer an unique perspective which will help everyone chart a way through some dangerous areas of this minefield and out the other side.
As disabled people we know that our lives have a value equal to anyone's. We know that although our impairments may cause us pain or discomfort, what really disables us as members of society is a socio-cultural system which does not recognise our right to genuinely equal treatment.
Facing discrimination is part of our daily lives. We are routinely denied access to transport, mainstream education, employment, information and services. We are routinely patronised, segregated and pushed to the margins of society. This kind of discrimination has led to poverty for the majority of disabled people. We have in this way become the subjects of charity, the objects of other people's pity, and have to fight continually to be recognised as the legitimate subjects of our own lives.
One key reason for this is that society continues to see disability as essentially a medical problem. This is where the new genetics enters stage Right or stage Left, brashly proclaiming its promise of a medical solution for disability. This is very much in line with trends in medicine generally which have narrowed the focus onto the pathology of disease and away form considerations of the broader social experience of illness. Prenatal genetic testing can be seen as the logical extension of this process - the simple equation of disability with genetic "abnormality." reference 1
The first thing to recognise, however, is that over 80% of disabled people are not born with their impairment but acquire it. Of those who have an impairment at birth, many of these are not genetically determined. Therefore, even if the threatening promise or the promised threat of a final genetic solution was delivered, disabled people would still be around. As DAN would say, "Get used to it!"
So what are the issues for disabled people posed by recent developments in genetics (screening, testing, gene therapy, cloning, etc.)? Are we on the verge or in the middle of a new, more subtle eugenic offensive which publicly speaks the liberating language of improved health while privately maintaining the more sinister ideal of "improving the human race?" reference 2
Does prenatal, or even post-natal, genetic testing or screening foster intolerance against disabled people? If we oppose it will this foster even greater intolerance? Will we be accused of special pleading? ("They would say that, poor things.") Or should we perhaps adopt suggestions that testing should be available only for conditions which result in death in childhood and/or lives characterised by pain and suffering? reference 3 Of course, this begs the questions of who decides what level of pain and suffering is too high or what is the value of a child (only to become an adult?). There is also the question of how we would go about getting this kind of policy change in a field being driven by a public fear of impairment, the rationing of health care as well as considerations of profit and market share for those developing the genetic tests. reference 4
Within the disabled peoples' movement we need to recognise that the moral, ethical and political tangles all this raises are frighteningly complex. reference 5 We need also to understand that because of this there are likely to be differing and strongly held views among disabled people and these need to be given respect and space within the debate. Therefore, while not everyone will agree with the arguments made in this paper, it is hoped that it will serve as a focus for a constructive dialogue on the road to arriving at an effective and workable consensus on the new genetics for the disabled peoples' movement.
The now widely discredited "science" of Eugenics was founded by Francis Galton, who first used the word in 1883. It comes from the Greek root meaning "good in birth" and to quote Daniel Kevles, "He intended it to denote the "science" of improving human stock by giving 'more suitable races or strains of blood a better chance of prevailing speedily over the less suitable." reference 6 Eugenics grew out of Darwin's ideas on evolution (Galton was Darwin's cousin) and also partook strongly of the positivist philosophy of the time, which argued, very roughly, that science had the answers for all society's ills. Eugenics was a way that people could scientifically assist a more desirable evolution of their own species. "Desirable" being understood, for example, as similar to middle-class intellectuals, say like Francis Galton.
Clearly, eugenics, then and in all its subsequent guises, has always been a socio-political and cultural ideology which has tried to clothe itself in supposed scientific objectivity. Although science itself is invariably informed by wider social concerns, it should be obvious that which type of people and what traits in people are desirable poses blatantly ideological, not scientific questions.
Sterilisation of "undesirables", a policy which gained widespread support from the late 19th century, was based directly on eugenic ideas about racial (human race) improvement. It was widely practised, particularly in the US, where it became the model upon which in the 1930s the Nazis were to develop their programme for sterilising, which from 1939 developed into the systematic killing of disabled people. In the name of "mercy killing", 100,000 disabled people had been murdered by 1941. This paved the way for Final Solution to the "problem of inferior races" - the mass murder of 12 million Jews, Gypsies, lesbians, gay men and others - which finally exposed the fatal logic of eugenics. Nonetheless, forced sterilisation of people in mental institutions continued into the 1970s in the US and elsewhere, and eugenically-inspired laws relating to marriage and sterilisation continue to exist in many American states. reference 7
Despite its unsavoury heritage, the eugenics ideal survives. It has changed its costume, but the song is still the same. Class or race, at least for all but the most extreme, is no longer at issue. The biological quality of human populations has now become the target, as advances in genetic engineering seem to hold out the prospect of moving us all closer to Galton's ideal of being "good in birth."
But genetics is not in the least eugenic, say proponents of the new genetics. For example, Hughes writes, reference 8 "While the biological factors in most forms of inequality are probably slight, genetic technology does promise to create a more equal society in a very basic way: by eliminating congenital sources of illness and disability that create the most intractable forms of inequality in society. We can go to great lengths to give the ill and disabled full access to society, but their disabilities place basic limits on how equal their social participation and power can be." Isn't it desirable, he asks, to rid humanity of disease and impairments? Do we want our children born with muscular dystrophy or cystic fibrosis? If these and other conditions can be prevented with the help of clinical genetic intervention what could possibly be the problem?
There are, of course, a host of ethical issues to consider, but the central fact is that there are still no cures and gene therapy remains a distant prospect. reference 9 Another key problem that has to be addressed is the way in which a genetic "abnormality" relates to a disease. reference 10 Except in a few instances, there is never a clear one-to-one relationship and environmental factors always have to be considered. reference 11
Although most geneticists would maintain that eugenic excesses were an aberration and not really connected to the science of genetics, David King argues that not only are the histories of genetics and eugenics inseparable, but that there are also powerful eugenic assumptions underpinning current genetic research and clinical practice. reference 12 He quotes a 1994-5 study of 37 countries by Dorothy Wertz and John Fletcher which found that outside Northern Europe the vast majority of genetic counsellors hold overtly eugenic views and directed their patients accordingly. This seems to confirm McGee's observation reference 13 that as early eugenicists spoke of improving the gene "pool", at the present time, "Genetic tests are allowing clinicians to play the role of lifeguards." It is also quite clear who they are encouraging to drown.
King further maintains that the danger of a eugenic resurgence, at least in the West, will not come through state coercion but will be more subtly wrapped in the lassez faire cloak of consumer choice. reference 14 "The danger we will need to guard against," writes King, "is the development of a kind of eugenic common sense, that it is irresponsible to refuse to undergo tests, and that every child has the 'right' to a healthy genetic endowment. ... We will need to be vigilant for eugenics disguised as public health measures."
The major problem caused by the new genetics is that despite the popular conception that genetic treatment is providing cures, there are virtually no new therapies for the vast majority of genetically-identified conditions. reference 15 Because of this, at the moment, prenatal genetic testing or screening leads not to the elimination of an impairment but can and often does lead (through abortion) to the elimination of a foetus. reference 16
Does this kind of selective abortion amount to an attempt to get rid of disabled people? Is it a form of eugenics? If we take this position are we then saying that an embryo or foetus is a potential person with all the rights to protection that this entails? If we are, does this put us in the Right to Life camp and at odds with the idea that a woman should have a right to choose with respect to her pregnancy?
This is how the argument over testing and abortion is generally framed, but to engage with it on these terms is to accept the basic premise that women actually have free choice. As we know, choice is heavily circumscribed by cultural, social and economic pressures and these are powerfully against a woman choosing to continue with a pregnancy after "an abnormality" has been detected. reference 17 The British abortion laws enshrine this prejudice by not allowing termination after 24 weeks unless a likely problem has been discovered.
We also need to remember that it was in the 1970s that legalised abortion and the development of amniocentesis came together to stimulate an increase in the detection of prenatal genetic conditions. It was pointed out at the time that a society which allows abortion on demand is not likely to question the abortion of a foetus with a genetic difference. This has proved to be the case, with growing public support, at least for genetic screening. reference 18 The social acceptance for aborting "problemed" foetuses is deep rooted and provides a tough challenge for the disabled peoples' movement.
Besides the question of prenatal testing and abortion, there is also the broader question of the possibility of "making" instead of "having" children; realising a genetic/eugenic ideal - the perfect person - through screening and/or more invasive genetic engineering. Hughes has even looked forward to parents being able to choose their children's characteristics from a gene catalogue. reference 19 However, assuming state direction (either through compulsion or incentives), not only would some form of increased genetic homogeneity be problematic, but as the old adage has it, you can't make angels until you know the specifications of heaven. It is within these god-like realms that the Human Genome Project's promise of unlocking the key to human life by complete genetic mapping invites an eugenic interpretation. reference 20 After all, how else are we to decipher the idea of an assumed genetic norm except as one which unifies the outlines of heaven and the image of its angels?
Further to the above point, Jonathan Beckwith, a professor of microbiology and genetics writing in 1974 about genetic screening laws in the US (which he argued represented the beginnings of a new eugenics program) warned:
While we may object to such decisions being made at all, it has been happening in health services informally for years. Furthermore, as Glenn McGee has observed, reference 22 in the near future, "Virtually every culture will have to cope with an unparalleled pressure to conserve social resources by applying pressure to individuals in an attempt to modify their reproductive behavior and other life choices." Other "life choices" are likely to include death, as euthanasia becomes a "choice" for elderly or disabled people whose quality of life is deemed socially insupportable - both personally (people being made to feel they are a burden) and in terms of resources.
Another problem which arises from the renewed belief in the power of genetics to provide answers (much in the way the 19th century positivists saw science in general as all powerful) is that there is a real danger of geneticisation wherein human qualities are reduced to a simple function of genetic codes. The complex relationships between people and the environment are ignored and all talk is of genetic predisposition to this or to that. "Geneticization builds upon medicalization, whereby people come to perceive the body in conformity with biomedical categories." reference 23 This has an all too familiar resonance for disabled people.
As Hughes comments demonstrate reference 24, the rise of genetic essentialism (or determinism) may cause people to lose sight or never even gain the understanding of the social, economic, cultural and political bases of disability. This may not seem such a serious problem in countries like Britain where the movement is strong and has started to convince governments to accept, at least in part, the social model. However, we should not be complacent nor minimise the potential risks to disabled people here or in other Western countries. reference 25 Furthermore, in parts of the world where the movement is weak and the social model all but unknown the idea that genetics holds the solution for the "problem of disability" might well unleash nakedly eugenic policies of forced screenings and abortions and perhaps compulsory sterilisation and/or euthanasia. The first two have already happened in China, reference 26 where since July 1996 pre-natal testing has been made compulsory as has the abortion of any "abnormal" foetus.
This leads on to perhaps the most worrying feature of the new genetics. Even if we accept at face value the anti-eugenic statements of its proponents, the new genetics is creating a powerful eugenic sword that could be unsheathed at any moment by a government able and willing to forget the lessons of the 1930s. China provides a chilling example of just this kind of forgetfulness and a warning of what can happen. And when the next country follows the Chinese model? And then the next? What practical value then the 'sincere intentions' of genetic researchers?
Finally, if we embrace the social model of disability and accept that it is not our impairments that disable us but society, should we be overly concerned about the elimination of impairments in any case (at least when it doesn't involve abortion)? Aren't we always saying that we are not "the epileptics" but people with epilepsy - that, in short, we are not our impairments? Are we, for example, against polio vaccine? Has it diminished the value of people who have had polio? Are we proud of our impairments or proud of being disabled people or proud of being ourselves? Can we usefully separate the two things? When is medical intervention acceptable? Only after we are born? When it doesn't mess with our impairments? Does medical intervention (including gene therapy if and when it arrives) equate with the medical model of disability?
We need to be clear about how to respond to these questions because they are sure to be put to us. In the first place, only on the crudest reading of the social model could it be argued that this model is about rejecting medical treatment or research. The medical model itself is not about medical intervention, but rather the medicalisation of disabled people. This is what we reject. Furthermore, whether or not we oppose the eradication of impairments is not a genuine question, for despite years of hype and billions of pounds, the choice of a cure simply does not exist in most cases. It is a question which is, therefore, mischievously beside the point in the real world where the most urgent issue for disabled people is combating the immediate socio-economic causes of disability. We are also not making a case against medical research, but rather one for a more equitable distribution of effort and resources in order that a real difference can be made now in the lives of disabled people.
Perhaps, however, we are starting from the wrong place. Rather than what sort of genetic future we want, we should be asking ourselves what sort of society we want and then directing research accordingly. Would it not be preferable to live in a society which did not strive for some sort of unobtainable, and probably undesirable, genetic perfection but instead sought to preserve diversity and enhance standards of human decency?
As disabled people, we find ourselves in the middle of the genetics minefield. From this precarious position we nonetheless have a unique view of the present and future dangers of the new genetics. We must speak out forcefully and effectively. Our view is far too valuable either to keep to ourselves or squander by adopting a sectarian, fundamentalist approach which plays into the hands of those who want to write off disabled peoples' concerns as little more than posturing, ill-informed Luddism. At the same time, we must avoid being intolerant of differing views within the movement as this does not sit well with the sensitivity and moral complexity of the issues raised by the new genetics or the varied, legitimate concerns of disabled people.
The following statement was originally a “draft statement” put forward by UKDPC but was subsequently adopted by UKDPC as the Official Position Statement on the New Genetics.
They've come for disabled people today.
Who will they come for tomorrow?
Those children with the supposed "gay" gene?
Perhaps those with the "criminal tendency" gene.
Or those who might be alcoholic or too aggressive
or not intelligent enough.
Or maybe only those foetuses who might develop heart disease, cancer, Alzheimer's disease, or other costly ailments.
To insure that disabled people do not face increased discrimination because of the new genetics, the UKDPC want to see the following take place:
Please send your comments by email to general@UKDPC.org.
[1] Glenn McGee, The Perfect Baby. A Pragmatic Approach to Genetics, London, 1997, pp.86-87.
[2] A good summary is given in DAA Newsletter Supplement, "Life, Death and Rights Bioethics and Disabled People". December 1997.
[3] David King, "Testing Times", in The New Internationalist, no.293, Aug. 1997, p. 14.
[4] Glenn McGee, "Drive-Through Genetic Testing Poses New Ethical Dilemmas," Academic Physician And Scientist, 1997.
[5] For an excellent treatment of the issues see: Tom Shakespeare, "Choices and Rights: eugenics, genetics and disability equality", in Disability & Society, Vol.13 no. 5 (1998)
[6] Daniel J. Kevles, In the Name of Eugenics. Genetics and the Uses of Human Heredity, Berkeley and Los Angeles, 1986, p. ix.
[7] David Pfeiffer, "Eugenics and Disability Discrimination", Disability and Society, Vol.9 no. 4, 1994, pp.482-487.
[8] J. Hughes, "Embracing Change with All Four Arms: Post-Humanist Defence of Genetic Engineering", Eubios Journal of Asian and International Bioethics 6 (1996), 94-101.
[9] See below, p. 4.
[10] Edward J. Yoxen, "Constructing Genetic Diseases", in Troy Duster and Karen Garett, eds., Cultural Perspectives on Biological Knowledge, NJ, 1984.
[11] McGee, The Perfect Baby, p.88.
[12] David King, "The Persistence of Eugenics", in GenEthics News, no. 22 Feb./March 1998, pp.6-8. Also see, Evelyn Fox Keller, "Nature, Nurture, and the Human Genome Project", in Daniel J. Kevles and Leroy Hood, eds., Sceintific and Social Issues in the Human Genome Project, London, 1992, pp. 281-299.
[13] McGee, The Perfect Baby, p.87.
[14] This concept was first coined by Kitcher in P. Kitcher, The Lives to Come: the genetic revolution and human possibilities, London, 1996.
[15] Mildred K. Cho, "Genetic technologies: issues for ethics committees", in Mid-Atlantic Ethics Committee Newsletter (date?)
[16] Interestingly, in a summary of the issues around genetic testing and screening prepared by the National Reference Center for Bioethics Literature at the Kennedy Institute of Ethics, abortion is never mentioned. SCOPE Note no. 22, Genetic Testing and Screening.
[17] King, p. 13.
[18] Darryl Macer, "Japanese attitudes to genetic technology: National and international comparisons. Public and academic support for the use of government-funded genetic screening in Japan," in Human Genome Research and Society Proceedings of the Second International Bioethics Seminar in Fukui, 20-21. There was also substantial majorities in favour of gene therapy. March, 1992. pp. 120-137,
[19] Hughes, p.98.
[20] Melanie Rock, "Genetic norms, eugenic logic and UNESCO's International Bioethics Committee" in Eubios Journal of Asian and International Bioethics 7 (1997), pp. 108-110.
[21] Kevles, p.279.
[22] Glenn McGee, "Ethical issues in genetics in the next 100 years", paper given at Kobe, Japan UNESCO Asian Bioethics Conference 1997.
[23] Melanie Rock, pp. 108-110.
[24] See above, p.3.
[25] Patricia J. Rock, "Eugenics and Euthanasia: a cause for concern for disabled people, particularly disabled women", Disability and Society, Vol. 11 no.1, March 1996, pp. 121-128.
[26] King, pp. 13-14.
[27] R. Hubbard, "Abortion and disability: who should and who should not inhabit the world", in L. Davis, ed., The Disability Studies Reader, NY, 1997, p. 199, quoted in Shakespeare, Choices and Rights.
Copyright © 2002-03 The United Kingdom's Disabled People's Council .
UKDPC is a registered charity. Charity No. 1068743.
