Anti Genetic discrimination Laws: As simple as it sounds?
A Choice is Yours biweekly column by Gregor Wolbring
30 May 2007
Over the last 20 year it has become a global concern that advancements in the area of genetic manipulation and prediction might lead to genetic discriminations (1;2). Groups such as the World Medical Health Association[1] and international documents such as the Universal Declaration on the Human Genome and Human Rights of UNESCO (Article 6), the European Convention for the Protection of Human Rights and Dignity of the Human Being (Article 11) and the Draft World Health Organization (WHO) guidelines on bioethics (Article 7)[2] demanded the prohibition of genetic discrimination. Increasingly national legislations tackle Anti-genetic discrimination prohibitions (1;2). In the latest development the, US House of Representatives passed H.R.493 on April 26, 2007. A message on a discussion forum described the scope of H.R.493 as follows;
[It is] “a bill which will make it illegal for a health plan or insurer to deny coverage or charge higher premiums to a healthy person based solely on a genetic predisposition to a disease. Similarly, an employer could not use genetic information in making hiring, firing or promotion decisions. The Senate Health, Education, Pensions and Labor Committee approved legislation by Sen. Olympia Snowe, R-Maine. (S 358), 19-2, on Jan. 31. It would forbid insurers and employers from requiring people to submit to genetic testing or from using genetic information to deny people insurance coverage, raise insurance premiums, or hire and fire workers. The bill awaits action by the full Senate.”[3]
Even though such developments are encouraging, important questions remain with regard to anti genetic discrimination laws and law proposals:
1. What is the meaning of the term ‘genetic discrimination?
2. What is covered by anti genetic discrimination laws?
3. Who is covered by anti-genetic-discrimination laws?
What is the meaning of the term ‘genetic discrimination?’If one would ask a person on the street, very likely the answer would be that genetic discrimination means discrimination against a person based on his or her genetic composition.
However the reality is different:
“Genetic discrimination is defined as discrimination against an individual or against members of that individual's family solely because of real or perceived differences from the "normal" genome of that individual. Genetic discrimination is distinguished from discrimination based on disabilities caused by altered genes by excluding, from the former category, those instances of discrimination against an individual who at the time of the discriminatory act was affected by the Genetic disease.”(3) [4]
This definition by Billings et al entails a number of important ramifications with regard to who and what is covered.
Whom Do Anti-Genetic-Discrimination Laws Cover?
Laws and law proposals could prohibit discrimination against, for example, people who have the gene for Huntington Chorea, whether or not they exhibit symptoms related to Huntington Chorea. In accordance with the definition by Billings et al, anti genetic discrimination law proposals and laws, including H.R.493, are only covering asymptomatic people and not symptomatic people (1;2). They are aimed at preventing discrimination of individuals based on their genetic predisposition to certain conditions as long as they haven’t developed the symptoms yet (1;2).
Furthermore, these laws and proposals are based on an important assumption with regard to the “persons” that they intend to protect: a person as a legal entity is understood to be someone who has already been born in most jurisdictions. Genetic discriminations happening through actions at the prebirth stage are not covered (1;2) However genetic discrimination is not confined to someone who has been born. Genetic discrimination happens on the level of a cell, a zygote, an embryo, a fetus, and a born being . Genetic discriminations are associated with a characteristic of a cell, a zygote, an embryo, a fetus, or a born being (1;2;4;5) Many countries and international documents developed discriminatory prebirth strategies by allowing deselection based on genetic characteristics that are labelled as being leading to ‘impairments’ and by prohibiting deselection based on genetic characteristics not seen as leading to ‘impairments’ such as ‘sex’. Genetic discrimination is even more clear in the distinction between prohibiting sex selection for ‘social reasons’ (for example, gender balancing or the wishes of parents) and allowing sex selection for ‘medical reasons’ (preventing so called X-linked diseases) (1;2;5).Other examples of genetic discriminations are how wrongful life suits and wrongful birth suits are being used (1;2;5).
What is covered by anti genetic discrimination laws and law proposals?
Most if not all anti-genetic-discrimination laws and law proposals pertain only to health insurance and employment discriminations. They do not cover disability and life insurance discriminations.
The Choice is Yours
In the above outline of anti genetic discrimination laws and proposals a number of limitations are noted. One wonders about the purposes of these laws . On the discussion forum announcing the newest US development one reads “The White House has said that President Bush will sign the bill when it passes the Senate. In a statement, the White House noted that "Concern about unwarranted use of genetic information threatens the utilization of existing genetic tests as well as the ability to conduct further research.” [5]
Are these bills in place to increase the use of genetic tests?
That genetic discrimination is limited to asymptomatic people is often justified in the US case with the argument that the Americans With Disabilities Act cover genetic discrimination related to the ‘impaired’ the symptomatic people. However a recent Wired article emphasized that the usefulness of the ADA in this regard has not been really tested. [6]Furthermore the Wired article suggested that one of the tasks of anti genetic discrimination legislation should be to put all laws which deal in some way or other with genetic discrimination under one roof.[7] Having different laws covering genetic discriminations experienced by different social groups increases the already existing inequities between social groups in regards to genetic discrimination. In this case the asymptomatic people are in a much better position to make sure that anti genetic discrimination measures are followed than the symptomatic people. I I outlined in earlier papers the problem with existing laws in the US covering genetic discriminations including the ADA (1;2). .
The scope of anti genetic discrimination laws and law proposals are another example of today’s two tiered ethical and legal system which approves applications (including genetic discrimination) for so called medical reasons targeting so called medical characteristics while questioning the targeting of societal characteristics (traits) and applications for so called social reasons. This two tiered discriminatory ethical framework among others fuels the tendency within the industry and society to medicalize the human body and human characteristics(6).
Using such a narrow artificial meaning of genetic discrimination can be seen as a way to get away with discriminatory practices as outlined earlier. As none of the anti genetic discrimination laws and law proposals mention what to do with symptomatic people and do not suggest, prescribe or mention remedies related to the symptomatic people they by default accept symptoms as a reason for discriminatory treatment. This might be discriminatory under the UN Convention on the rights of persons with disabilities, which are based on the assumptions that impairments are not a reason for discrimination. However whether it’s a violation or not, this asymptomatic focused discourse removes the symptomatic people further from a social justice human rights framework. The argument used by the American Civil Liberties Union (ACLU) in its campaign for an anti-genetic-discrimination law, provides a good example. The ACLU advocates “that Congress should take immediate steps to protect genetic privacy . . . [because] it is inherently unfair to discriminate against someone based on immutable characteristics that do not limit their abilities . . .” [8] (1;2). So is it fair to discriminate if abilities are limited? Which abilities under what circumstances? This seems to be clear case of ableism as outlined in a recent column.
The use of the definition by Billing et al, and similar ones, appears to lead to anti genetic discrimination laws that fall short of providing full protection. The resulting laws do not allow for dealing in a coherent fashion with the different forms of genetic discriminations and they failto deal with possible future forms of genetic discriminations e.g. between the genetically enhanced and unenhanced (1;2;5). A more simple and useful alternative to the definition provided by Billins et al might be:
Genetic discrimination occurs if we deal with humans or potential humans in a discriminatory fashion based on the knowledge, perception or reality attached to the consequences of having a particular gene, gene activity or gene product.
Please contact the author for information on these references or for additional future references at gwolbrin@ucalgary.ca
© Gregor Wolbring, All Rights Reserved, 2007. Please contact the author for permission to reprint. More columns can be found at innovationwatch.
Gregor Wolbring is a biochemist, bioethicist, disability/vari-ability/ability studies scholar, and health policy and science and technology governance researcher at the University of Calgary. He is a member of the Center for Nanotechnology and Society at Arizona State University; Part Time Professor at Faculty of Law, University of Ottawa, Canada; Member CAC/ISO - Canadian Advisory Committees for the International Organization for Standardization section TC229 Nanotechnologies; Member of the editorial team for the Nanotechnology for Development portal of the Development Gateway Foundation; Chair of the Bioethics Taskforce of Disabled People's International; and former Member of the Executive of the Canadian Commission for UNESCO (2003-2007 maximum terms served). He publishes the Bioethics, Culture and Disability website and authors a weblog on NBICS and its social implications.
References
1. Wolbring, G.The animal farm philosophy of genetic discrimination (2004) Law Hum. Genome Rev 21 165-184, PM:15832807,
2. Wolbring, G., (2004) in "Society and Genetic" Information: Codes and Laws in the Genetic Era (Sandor J, Ed.) pp 161-187, CPS books Central European University Press,
3. Billings, P.Discrimination as a Consequence of Genetic Testing (1992) American Journal of Human Genetics 50, 476-482, http://www.philosophy.ilstu.edu/horvath/PHI138Bioethics/~vault/X0001_Billings.html,
4. Wolbring, G.Eugenics, euthenics, euphenics: the underlying issue is that someone decides, based on values, which characteristics should be part of society and which are not (1999) Genewatch. 12, 3 8-10, PM:11865876,
5. Wolbring, G. Folgen der Anwendung genetischer Diagnostik für behinderte Menschen (Consequences of the Application of Genetic Diagnostics for Disabled People), Expert Opinion for the Study Commission on the Law and Ethics of Modern Medicine of the German Bundestag, 2001, http://www.bundestag.de/gremien/medi/medi_gut_wol.pdf,
6. Wolbring, G. HTA Initiative #23 The triangle of enhancement medicine, disabled people, and the concept of health: a new challenge for HTA, health research, and health policy, 2005, ISBN 1-894927-36-2 (Print); ISBN 1-894927-37-0 (On-Line); ISSN: 1706-7855 , http://www.ihe.ca/documents/hta/HTA-FR23.pdf,
Footnotes:
[1] World Medical Association Declaration on the Human Genome Project. Adopted by the 44th World
Medical Assembly in Marbella, Spain, September 1992. For the complete text, see
http://www.wma.net/e/policy/g6.htm .
2 The World Health Organization (WHO) Draft Guidelines on Bioethics was (Article 7) presented to the World
Health Assembly in May, 1999. For the complete text, see http://www.nature.com/wcs/b23a.html.
3 http://groups.google.com/group/emergingtechnologies/msg/48f7b8238b7f4595
4 Paul R. Billings, et al., "Discrimination as a Consequence of Genetic Testing," American Journal of Human Genetics 50 (1992), 476-482. © 1992 by the American Society of Human Genetics. Reprinted by permission of the author and the publisher, the University of Chicago Press.
http://www.philosophy.ilstu.edu/horvath/PHI138Bioethics/~vault/X0001_Billings.html
5 http://groups.google.com/group/emergingtechnologies/msg/48f7b8238b7f4595
6 GENETIC DISCRIMINATION BAN CLEARS HOUSE; SENATE OK EXPECTED
Brandon Keim http://www.wired.com/medtech/genetics/news/2007/04/gene_act
7 GENETIC DISCRIMINATION BAN CLEARS HOUSE; SENATE OK EXPECTED
Brandon Keim http://www.wired.com/medtech/genetics/news/2007/04/gene_act
8 American Civil Liberties Union (2002) “ACLU Renews Calls for Congress to Ban Genetic Discrimination,” Workplace Rights, Press Release, February 13, 2002 (New York: ACLU), available at <http://www.aclu.org/WorkplaceRights/WorkplaceRights.cfm?ID=9688&c=180>,< http://www.aclu.org/workplacerights/genetic/13383prs20020213.html