The effect of genetic determinism and exceptionalism on law and policy.
"We used to think our fate was in the stars. Now we know [it] is in our genes." --James Watson, 1989 (2)
Genetic determinism and genetic reductionism are important concepts that, in the latter half of the twentieth century, have caused the geneticization of medical and social issues. (3) In turn, the idea of genetic exceptionalism became prevalent in legislative and policy development. Exceptionalism, which has arisen with issues relating to HIV, (4) is associated with the idea that certain material and information is distinct from standard material or information and requires special governance for its acquisition, possession, and use. As a result of genetic exceptionalism, laws and policies around the world in the areas of informed consent, privacy, patenting and discrimination, have been influenced in different ways and at varying levels. The purpose of this study is to examine this influence as there is little discourse on the impact of genetic determinism and exceptionalism on policy development.
There are several theories that have developed about the role of genetics in human existence. The most commonly used terms are determinism, reductionism, essentialism, and exceptionalism. Determinist theory provides that all events are inevitable consequences of antecedent causes; denying the possibility of free will. For example, the statement 'It's in my blood/genes, I can't avoid it' is deterministic. In a reductionist framework, the belief is held that uncovering the base-pair sequence of the human genome will lead to an understanding of what it is to be human because the whole can be understood as a sum of its component parts. Genetic essentialism also attributes human nature to our genetic make-up because our DNA is essential (although not necessarily sufficient) to making a person the way they are. Finally, exceptionalism asserts that genetic material and information is unique from other biological material and medical information and requires special laws and policies to govern its use.
As genetic theory has moved beyond the one gene--one trait paradigm into a complex networking theory of gene expression and environmental interaction, (5) the ELSI (ethical, legal, and social issues) academic community has since followed with the abandonment of deterministic ideas. (6) It is hypothesized that policy instruments have also begun to follow this trend and that legislation, being the least flexible, will react even more slowly. It is difficult to predict how deterministic and exceptionalist attitudes in public perception have been altering as public attitude is informed by science and media, but also influenced by the creation and implementation of policy and legislation.
The ethical and pragmatic issues of this project can be generalized to the examination of how policy and law is influenced by theory, media hype and public attitudes. What is the responsibility of law and policy-makers to ensure that their document drafting is properly informed and if policy is incorrectly informed, how would one go about and fix it? In the past, public representations of genetics have featured inappropriately deterministic messages, (7) and these deterministic messages may influence policy making and lead to inappropriate and inaccurate impressions about both the value and risks associated with genetic material, information, and technology.
An ongoing compilation and analysis of pertinent legislative and policy documents is being performed to investigate these issues. In large part, documents were compiled through the HumGen International database, (8) explicit statements for or against deterministic or exceptionalist attitudes are being noted, and the presence of longitudinal trends in attitude are being examined. Although results are preliminary, it appears that the idea of genetic determinism is being rejected by contemporary policy-makers; however, exceptionalism is still prevalent as genetic issues have been afforded special treatment in many laws and policies around the world.
Policy statements exist that demonstrate a determinist or exceptionalist influence; however, there are also statements that are explicitly against this. Occasionally a mixture of statements can appear within the same document as a paradox. For example, a 2003 UNESCO declaration contains an anti-reductionist statement followed immediately by an pro-exceptionalist statement. (9) A second juxtaposition of explicit statements of theory occurs in a Nuffield Council report where one of the most articulated statements of genetic exceptionalist justifications is cited, followed by an anti-exceptionalist conclusion that these reasons apply to other medical information and that all medical data should be kept with special care:
The HGC [Human Genetics Commission] considers that genetic information:
i. is uniquely identifying and provides information about family relationships; ii. can be obtained from a small sample, possibly taken without consent; iii. can be used to predict future events; iv. may be used for purposes other than those for which it was collected; v. is of interest to third parties such as employers and insurers, families, friends, potential spouses; vi. may be important for determining susceptibility and effectiveness of treatment; vii. can be recovered from stored specimens even after many years. 1.9 However, against these arguments in favour of genetic exceptionalism, we observe that the majority of the seven features listed above have parallels in other areas of medical practice, for example testing for human immunodeficiency virus (HIV), and cholesterol testing ... 1.10 Given the similarities between genetic and other forms of personal information, it would be a mistake to assume that genetic information is qualitatively different in some way. In our view, the information provided by a medical test is the key to considering its implications, not whether the test involves genetic data. (10)
This statement can be seen as an example of the movement away from the strong genetic exceptionalist message in the policy making of the 1990s.
Whether or not an explicit statement exists, the exceptionalist attitude is implicitly demonstrated by the volume of legal and policy instruments addressed specifically to genetic issues. (11) These laws, for the most part, remain untested in the courts and their impact is unclear. The courts could take into account the current understanding of genetics when applying these laws and can treat genetic material or information the same as other biological material or medical information. A more detailed analysis of specific laws and policy statements can also lead to policy reform recommendations that would reflect the more complete, current genetic theory.
Michael Sharp is a third year law student, Faculty of Law, University of Alberta, Edmonton, Alberta.
1. This research project coincides with a Health Law Institute project funded by GE3LS. The results of this project were presented at the Health Law Students' Conference in September 2006 and the American Society of Human Genetics annual meeting in October 2006.
2. Leon Jaroff, "The Gene Hunt" Time Magazine 133:12 (20 March 1989) 62.
3. Timothy Caulfield, "Underwhelmed: Hyperbole, Regulatory Policy and the Genetic Revolution" (2000) 45 McGill L. J. 437.
4. Lainie Friedman Ross, "Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV" (2001) 29: 2 J. L. Med. & Ethics 141
5. Henry Gee, Jacob's Ladder; The History of the Human Genome (New York: W.W. Norton & Company, Inc., 2004) at 238-251.
6. See e.g. Mark A. Rothstein, "Genetic Exceptionalism & Legislative Pragmatism" (2005) 35:4 Hastings Center Report 27.
7. Supra note 2; Dorothy Nelkin, "Molecular Metaphors: The Gene in Popular Discourse" (2001) 2 Nature Reviews. Genetics. 555.
8. HumGen International, online: University of Montreal <http://www.humgen.umontreal.ca/int/>.
9. International Declaration on Human Genetic Data, GC Res., UNESCO, 32nd Sess. (16 October 2003) at Art. 3 and 4. UNESCO has remained consistently exceptionalist in its policy making: International Bioethics Committee, Universal Declaration on the Human Genome and Human Rights, GC Res., UNESCO, 29th Sess. (1998) at Art. 2; International Bioethics Committee, Report on Confidentiality and Genetic Data, UNESCO (30 June 2000) at Art. III; International Declaration on Human Genetic Data at Art. 4.
10. Human Genetics Commission, Inside Information: Balancing interests in the use of personal genetic data (London: Department of Health, 2002) at 30, cited in Nuffield Council on Bioethics, Pharmacogenetics: ethical Issues (London: Nuffield Council on Bioethics, 2003) at 6. [emphasis added]
11. Supra note 8.
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|Publication:||Health Law Review|
|Date:||Mar 22, 2007|
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