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? How are societal structures affected? Can we draw a line between technologies if they are based on the same societal philosophy?

 

1) Marginalized groups and people with characteristics targeted by the new technologies are not those answering these questions

To give two examples,

a) Food biotech: justifications for GM food are that it will end world hunger and increase world food production. But countries where hunger is prevalent are typically excluded from the debate. Furthermore, should there be a technological fix, or is a societal solution more appropriate? Can gene technology prevent hunger or should the cultural/societal frameworks under which food is produced, sold and disseminated be changed?

b) Human genetics: a major justification for advancing human applications of gene technology is the prevention of suffering, disabilities, diseases and gene ‘defects’. One of the first targets was Down’s syndrome. Yet, people with Down’s syndrome did not demand predictive tests to prevent the birth of people who will have Down’s syndrome. Instead, they want access to and acceptance by society. However, no one asks their opinion; they are merely treated as objects justifying the use and development of gene technology. The same questions apply. 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.

 

2) Predictive tests to prevent the birth of people with undesirable characteristics will impact how society views and treats people with these characteristics

The disability community argues that testing for disabilities, diseases and impairments will increase prejudice against people who are labeled as such. How do other targeted groups feel?

 

Bioethicists and others argue that, “sex selection lowers the status of women in general and perpetuates the situation that gave rise to it” [1, 2].  And “the availability of procedures to select the sexual orientation of children would contribute to discrimination and prejudice against lesbians, gay men and bisexuals” [3].

 

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 tests for 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. One might argue that their human worth, if not their human rights, have been diminished” [4].

 

3) Animal Farm Philosophy (some are more equal than others)

With gene/nanotechnology, we can 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, questioning the dynamics by which some characteristics are ‘unwanted’ and the preference for medical solutions, i.e. predictive testing and subsequent cure or termination.

 

On the contrary, emotional and argumentative 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 [3,5].  This makes a broad alliance impossible, as different groups/individuals will be in direct conflict of interest.

 

4) We can’t draw a line in the usage of the technologies based on characteristics

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, says, “…most people… have fairly clear views on what level of disability appears to them to be consistent with a worthwhile outcome to themselves.  I am actually irritated if people say, ‘everyone thinks that condition is so bad that we should have prenatal diagnosis and termination of pregnancy but condition Y (e.g., cleft palate) isn’t bad enough’. The truth is you can’t say that in terms of a condition, you can only say it in terms of a woman, of her family, her perceptions, her social context, her economic context…. We must avoid categorizing diseases as severe or not severe. This can only be seen in the context of the overall holistic situation of a family and individuals” [8]. Others share Williamson’s argument that no distinction can be made between disabilities [5,9,10].  

 

If socio-economic context and personal or family circumstances are key to eugenic decisions, not the disability or disease or gene ‘defect’, then decisions leading to sex de-selection and sexual orientation de-selection (if they find the gene), should be seen in the same light [6,7,10].

 

5) The targeting of a characteristic will not be limited to a pre-birth timeframe

Once pre-birth eugenic solutions are established for a certain characteristic, after-birth eugenic measures like infanticide, DNR (‘Do Not Resuscitate’) and euthanasia might be used to deal with people living with the ‘undesirable’ characteristic. Indeed, in countries that can’t afford the technologies, such measures might be their only option.

 

Peter Singer, a Princeton University philosopher, says [11], “In the modern era of liberal abortion laws, 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” (p. 210).  “If we consider it justifiable for a women to kill her fetus in the womb… because the fetus has been shown to have Down Syndrome, this judgement must have some bearing on our views about human life immediately after birth” (p. 85).

 

6) Distinction between genetic de-selection (negative eugenics) and genetic enhancement (positive eugenics) is untenable

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 give birth to 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”  [12].

 

Edwards’ comments provide a clue for another consequence. 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?

 

7) Distinction between genetic cure and genetic de-selection is untenable.

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.

 

8) Distinction between somatic and germ line gene therapy is untenable

There are two types of gene therapies. 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, allowing the option of birth and later treatment. Germ line gene therapy includes genetic changes in reproductive cells, the egg and sperm. This altered genetic make-up would be passed on to children and following generations.

 

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 problems with this distinction: a) it can’t be guaranteed that somatic gene therapy does not modify reproductive cells; b) germ line gene therapy might work in some cases where somatic gene therapy doesn’t; c) 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, necessitating somatic gene therapy again and d) justifications for somatic over germ line gene therapy are cynical, based on assumptions that it is acceptable for individuals to put themselves at risk, without affecting future generations or society.

 

If as a society we embrace biological eugenics, then it’s only fair that society bears the danger. Furthermore if somatic gene therapy does not work but germ line gene therapy does, can we oppose the latter? And if somatic gene therapy is safe, can we see germ line gene therapy as unsafe? I don’t think so.

 

9) No distinction between genetic and non-genetic de-selection

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% [13].  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 (not straight legs) decreased from 2041 to 747 births per year  [14]. 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 [15].

 

10) No distinction between genetic and non-genetic enhancement

Nanotechnology promises much. Applications for the human body are similar to gene technology in scope and philosophy. It is seen as contributing to “ a wide range of assistive solutions, from prosthetic limbs that adjust to the changes in the body, to more biocompatible implants, to artificial retinas or ears. Other opportunities lie in the area of neural prosthesis and the “spinal patch,” a device envisioned to repair damage from spinal injuries” [16]. These applications are nothing more than non-genetic enhancements, fitting a philosophy “that humanity can, and should strive to higher levels, both physically, mentally and socially” [17].

 

11) 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 [18].

 

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 agreed with the statement “that it is unfair to the child to be born with a disability” [19].

 

If the above statements hold true, it follows that it is irresponsible to not provide your child with a cure. Bioethicist John Harris says [20], “I do not believe there is a difference between choosing a preimplantation deaf embryo and refusing a cure to a newborn. Nor… an important difference between refusing a cure and deliberately deafening a child”. He asks, “But {assume} now a cure for congenital deafness is discovered, it is risk free and there are no side effects. Would the parents in this case be right to withhold this cure for deafness from their child?”

 

If parents are obliged to consider the quality of their children and if it is irresponsible to have a child with a disability [12,19], wouldn’t parents be obliged to add  ‘advantageous’ genes to their children’s genetic make-up? Furthermore, wouldn’t parents be obliged to give their child non-genetic cures? Wouldn’t deaf parents be obliged to give their children hearing ability through cochlear implants? [20]. 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?

 

1. Wertz, D.C. and J.C. Fletcher. 1998. ‘Ethical and social issues in prenatal sex selection: a survey of geneticists in 37 nations’ Social Science and Medicine 46(2): 255-273. http://www.shriver.org/Research/SocialScience/Staff/Wertz/sexselect.htm

2. Sherwin, cited in Wertz, D.C. and J.C. Fletcher. 1997. ‘A Critique of Some Feminist Challenges to Prenatal Diagnosis’ J. Contemp. Health Law Policy 13(2): 299-345. http://www.shriver.org/Research/SocialScience/Staff/Wertz/critique.htm 

3. Stein, E. 1998. ‘Choosing the sexual orientation of children?’ Bioethics 12(1): 1-24.

4. See ‘Amnesty’s latest fear: how our genes may determine our fate’ The Independent. 18 February 1998, p.19.

5. Wertz, D.C. 2000. ‘Drawing lines for policymakers’, in Parens, E. and A. Asch (eds) Prenatal Testing and Disability Rights. Washington DC: Georgetown University Press, p.268.

6. See ‘Science and the disadvantaged’ by Wolbring, G. 2000. Edmonds Institute, Edmonds, USA. ISBN 1-930169-12-4. http://www.edmonds-institute.org/wolbring.html

7. Wolbring, G. 2001. Expert opinion for the Study Commission on the Law and Ethics of Modern Medicine of the German Bundestag, ‘Folgen der Anwendung genetischer Diagnostik fuer behinderte Menschen’ (Consequences of the application of genetic diagnostics for disabled people). http://www.bundestag.de/gremien/medi/medi_gut_wol.pdf

8. From Bob Williamson’s speech at the conference ‘The Pregnant Woman with an Anomalous Fetus; Is Current Management Ethically Based?’ Melbourne, Australia. 13 February 1998.

9. European Commission: The Ethical Aspects of Prenatal Diagnosis. Opinion of the Group of Advisers on the Ethical Implications of Biotechnology, Brussels. 1996.

10. Asch and Parens Hastings Center. Sept/Oct 1999. Special Supplement S1-S25.

11. Singer, P. 1994. Rethinking Life and Death. Oxford: Oxford University Press.

12. Rogers, L. 1999. ‘Having disabled babies will be ‘sin’, says scientist’. http://www.sunday‑times.co.uk/news/pages/sti/99/07/04/stinwenws02034.html?999

13. Blumenfeld, Z., I. Blumenfeld and M. Bronshtein. 1996. ‘The cleft palate’. Craniofacial Journal 36(2): 105-107.

14. Dept. of Health (UK). 1994. ‘Health and Personal social service statistics for England 1994’. London HMSO, Table 4.3: 24.

15. Stoll C. et al. 2001. ‘Evaluation of prenatal diagnosis of associated congenital heart diseases by fetal ultrasonographic examination in Europe’ Prenat. Diagn. 21: 243-252.

16. Societal Implications of Nanoscience and Nanotechnology. NSF Report, March 2001, p.41. http://www.wtec.org/loyola/nano/societalimpact/nanosi.pdf

17. http://www.aleph.se/Trans/

18. Glover, N.M. and S.J. Glover. 1996. ‘Ethical and legal issues regarding elective abortion of fetuses with Down Syndrome’ Mental Retardation 34: 4,207–21

19. Wertz, D.C. 1998. ‘Eugenics is Alive and Well’ Science in Context 11(3-4): 493-510.

20. Harris, J. 2000. J. of Medical Ethics 26: 95-100.

 

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