Genetic counseling is a professional field where practitioners provide genetic information about embryos, foetuses, newborns or adults to clients (usually prospective parents). A common practice among genetic counselors is to advice against sub species-typical labelled fetuses, such as those who test positive for trisomy 21, a genetic indicator of Down syndrome. In this way, genetic counselors can facilitate eugenic practices.
History of Genetic Counseling
Although genetic counseling based on hereditary history has been performed for hundreds of years as a profession it was only officially organized in the 1970’s in North America (Krush, 1972). Two national bodies exist within North America. There is National Society of Genetic Counselors (NSGC) in the US and there is the Canadian Association of Genetic Counselors in Canada (CAGC). The first master degrees in genetic counselors were award from Sarah Lawrence College in Bronxville, NY in 1971.
According to the NSGC, the role of genetic counseling is to help “people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease”. This process integrates:
• Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence.
• Education about inheritance, testing, management, prevention, resources and research.
• Counseling to promote informed choices and adaptation to the risk or condition (NSGC, 2014).
According to the CAGC, genetic counsellors are health professionals that provide “individuals and families with information on the nature, inheritance, and implications of genetic disorders to help them make informed medical and personal decisions” (CAGC, 2014).
Genetic Counseling and Eugenics
The Genetic Information Nondiscrimination Act of 2008 (GINA) (USA) acknowledges that genetics and eugenics are closely linked:
The early science of genetics became the basis of State laws that provided for the sterilization of persons having presumed genetic ‘‘defects’’ such as mental retardation, mental disease, epilepsy, blindness, and hearing loss, among other conditions. The first sterilization law was enacted in the State of Indiana in 1907. By 1981, a majority of States adopted sterilization laws to ‘‘correct’’ apparent genetic traits or tendencies. (An Act To prohibit discrimination on the basis of genetic information with respect to health, 2008)
However, eugenics was and is not only linked to genetics but also to genetic counseling. Dr. Margaret Thompson, a recipient of the Order of Canada and former president of the Genetics Society of Canada, has said, as the defending witness for the Alberta government in the Leilani Muir sterilisation case:
[S]ome causes off mental effectiveness are hereditary and when the eugenics board was created there was a real danger of passing on those causes because contraceptive choices were limited. Today, people at risk of inheriting or passing on a defect to their children have the pill and other contraceptives available. They can seek genetic counselling before a child is born and can abort a child likely to be defective. (Thomas, 1995, n.p.)
As the Margaret Thompson quotation explicitly highlights, genetic counseling can be used to advice mothers to abort ones fetus deemed defective. In the eyes of Margaret Thompson, the genetic counselor would take over the role the eugenic board had before. Indeed, the role of genetic counselors is a debated one. Many believe that non-directive counseling is not possible and the directive nature of genetic counselling has been reported (Fletcher, J. C. & Wertz, 1987; Wertz & Fletcher, 1988; Clarke, 1991).
Genetic Counseling through a disability studies lens
From a disability studies perspective, genetic counseling is problematic because it is grounded in risk-deviation language—for example, the use of the term ‘disorder’ in the quote from the Canadian Association of Genetic Counsellors or the use of terms ‘risk’, ‘condition’ and ‘disease’ by the National Society of Genetic Counselors quoted above. The major organizations do not speak of bio-diversity or ability-diversity language. Rather, they use language that is intrinsically biased toward species-typical, what is genetically ‘normal’ for the body. Because genetic counseling uses ‘risk’ and ‘deviance’ language to characterize genetic differences from the species-typical, it runs counter to narratives such as the one held by the Canadian Down Syndrome Society, which says that:
• Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition.
• Down syndrome is not a disease, disorder, defect or medical condition.
• Down syndrome itself does not require either treatment or prevention (Canadian Down Syndrome Society, 2007).
The NSGC states that they believe “that no individual should be discriminated against on the basis of genetic information obtained from tests or family history (NSGC, 2011). However, this statement does not mean that NSGC believes in protection against genetic discrimination happening on the prebirth stage (fetus or embryo) as fetus or embryos are not seen as individuals or persons. The NSGC states further that they support the protections of the Genetic Information Nondiscrimination Act of 2008 (GINA), which safeguards individuals with regard to employment and medical insurance eligibility (NSGC, 2011). However, GINA covers discrimination based on genetic information in health care and employment. GINA does not cover pre-birth discrimination based on genetic information and it does not cover genetic discrimination if one has already developed undesirable symptoms in tune with one’s genetic make-up. As such, GINA is rather limited from a disability studies perspective (Wolbring, 2004a, 2004).
As long as Genetic counseling uses risk, deviance and medical language as a framework of reference they will provide biased and directive advice and information by default and as such they are a problem for narratives that do not reflect this negative framework, such as Deaf Culture or the above mentioned understanding of Down Syndrome. Given that humans might be increasingly able to perform positive eugenics (somatic and germline genetic enhancement/synthetic biology) it will be interesting to see what role genetic counselors will play in future in the genetic enhancement and synthetic biology arena.
Krush, A. (1972). History of Genetic Counseling. Trans Nebr Acad Sci, 1,(n.a).
National Society of Genetic Counselors (NSGC). (2014). THE LEADING VOICE FOR GENETIC COUNSELORS. Retrieved (n.d.) from: http://nsgc.org/p/cm/ld/fid=6.
Canadian Association of Genetic Counsellors. (2014). Canadian Association of Genetic Counsellors. Retrieved (n.d.) from: http://www.cagc-accg.ca/?page=1.
National Society of Genetic Counselors (NSGC). (2014). WHAT IS GENETIC COUNSELING?. Retrieved (n.d.) from: http://nsgc.org/p/cm/ld/fid=43.
Canadian Association of Genetic Counsellors. (2014). What is a Genetic Counsellor? Retrieved (n.d) from: http://www.cagc-accg.ca/?page=115.
One Hundred Tenth Congress of the United States of America. (2008). An Act To prohibit discrimination on the basis of genetic information with respect to health insurance and employment. Retrieved (n.d.) from: http://www.gpo.gov/fdsys/pkg/BILLS-110hr493enr/pdf/BILLS-110hr493enr.pdf.
Thomas, D. (1995). Geneticist defends sterilization in era before the pill. Calgary Herald, A14.
Clarke, A. (1991). Is non-directive genetic counselling possible?. The Lancet, 338(8773), 998-1001.
Fletcher, J. C. & Wertz, D. C. (1987). Ethics and human genetics: a cross-cultural perspective. SeminPerinatol, 11(3), 224-228.
Wertz D. C., & Fletcher, J. C. (1988). Attitudes of genetic counselors: a multinational survey. Journal of Human Genetics, 42(4), 592-600.
Canadian Down Syndrome Society. (2007). Down Syndrome Redefined. Retrieved (n.d.) from: http://www.cdss.ca.
National Society of Genetic Counselors (NSGC). (2011). Nondiscrimination. Retrieved (n.d.) from: http://nsgc.org/p/bl/et/blogid=47&blogaid=32.
Wolbring, G. (2004). Disability rights approach to genetic discrimination. In J. S. (Ed.), Society and Genetic" Information: Codes and Laws in the Genetic Era(pp.161-187). Central European University Press.
Wolbring, G. (2004). The animal farm philosophy of genetic discrimination. Law Human Genome Review, 21, pp. 165-184.