Volume 4, Issue 04 - June 2001

Genetic Exceptionalism in Anti-Discrimination Legislation

If the goal of legislation is to prevent discrimination, is genetic...information any more exceptional...than non-genetic medical information?

"There is a danger that we will respond -- that is, make laws, regulations, and policy decisions -- not to the reality of genetic science but to the hyperbole of the genetic revolution."¹

- Prof. T. Caulfield, Health Law Institute, University of Alberta

Along with the completion of the Human Genome Project, other important advances in biotechnology have recently occurred. In particular, individualized genetic testing has recently become a reality for certain disorders. For example, tests now exist that can confirm or eliminate doubts individuals may have regarding their genetic inheritance. The results and implications of widespread testing profoundly affect the predictive, diagnostic, and clinical branches of health care. These tests also bring with them a host of concerns, especially with regard to the increased possibility of inappropriate discrimination.

There are now a small but growing number of reports of actual employment or insurance discrimination (i.e. the denial of employment or insurability) "on the basis of factors related to genetics."² For example, in 1990 a Quebec Superior Court ruled that an individual carrying the genetic mutation for myotonic dystrophy (Steinert Disease), though only mildly symptomatic, had a known physical anomaly and this rendered his life insurance contract void because the disorder had not been initially declared.³ Perhaps as a result of this potential for discrimination, citizens have consistently supported the notion of genetic privacy and been wary of genetic testing despite the benefits that it might bring. This article will examine one possible response to this problem.

Genetic Anti-Discrimination Legislation

Genetic anti-discrimination legislation (GADL) is a public policy measure frequently proposed to address issues of both insurance and job discrimination. Most commonly, such legislation seeks to prevent agencies or employers from accessing genetic information or demanding the results of genetic tests which, if revealed, might be grounds for the denial of insurance or employment. (It should be noted that this legislation might improve certain individuals' chances of obtaining insurance, particularly if they have previously experienced discrimination on the basis of genetic information.)

The widespread interest in this type of legislation speaks to at least three issues specific to genetic testing and insurance. First, public distaste for potentially inaccurate and erroneous testing is strong. Second, disability rights groups have publicized the potentially stigmatizing effects of such testing. Third, employment and insurance are valued as more than simple monetary arrangements -- they have a larger purpose in promoting social stability during difficult times. This suggests that regulating the use of personal information to prevent insurance discrimination is justifiable.

Non-genetic factors such as disability or non-genetic test results have been used in the past to prevent individuals from gaining insurance or employment. A crucial feature of current GADL is that it does not prevent non-genetic information from being revealed; it depends to a large degree on the assumed unique predictive value of genetic tests over more traditional, non-genetic medical information.

This topic thus bridges a number of fields: the biomedical sciences; public health screening and programs; the law; the economic impact of costly but potentially beneficial tests; the role of the medical practitioner in testing, diagnosis, and administration; and public policy at the local, national, and international levels.

Discussion, study, and policy work in this area would be especially worthwhile for Canada, where people have experienced genetic discrimination but where no means of recourse are avaliable to these individuals.

Genetic Exceptionalism

Alongside discussion of the specifics of GADL, many commentators have remarked that modern biology is increasingly an information science (informatics). Yet comparatively few analysts have investigated the accompanying belief, inherent in GADL, that genetic information is exceptional, somehow distinct from and more significant than other medical information.⁴ There are a number of grounds commonly mentioned in support of creating special legislation for genetic data - thereby treating it differently:

• The unique predictive value of genetic information, which may forecast the onset of disease years before the appearance of symptoms, or, alternately, inform individuals that they are not at risk for an inherited disorder.

• Concern for kin which comes into conflict with personal autonomy, since genetic tests necessarily reveal information about the status of family members -- whom one may have a duty to inform but who may not wish to know, or who may be uncomfortable with others holding genetic knowledge about them.
• The impact such information may have on public perception of one's family, local community, ethnic background or race, since genetic diseases sometimes correlate with these groups and may further stigmatize those already being discriminated against.
• The belief that one's genetic make up is beyond one's control -- and that people should not be penalized for that for which they bear no responsibility.

However, critics of genetic exceptionalism charge that these inferences are similarly applicable to non-genetic medical information which is available to insurers and not privacy-protected by most types of GADL. For example, even though it has no known correlation to genetic constitution, a history of past tuberculosis infection in one's family can be predictive of decreased life expectancy. It often speaks to and predicts poor family health, and correlates with ethnicity and geography, as in the case of aboriginals in Canada's north. TB infection is known to relate to the socioeconomic circumstance one is born into. If the goal of legislation is to prevent discrimination, is genetic medical information any more exceptional (and therefore more worthy of protection) than non-genetic medical information that might still be used as grounds for discrimination? Moreover, by treating genetic information as exceptional, are we succumbing to an erroneous worldview that reduces our health and identity to the sum of our genes?

From a public policy perspective, one solution to this conundrum might be to abandon such legislation altogether. However, this would do nothing to alleviate the original problem of discrimination, on the basis of medical information, genetic or otherwise. Alternately, governments could widen the scope of GADL to protect both genetic and non-genetic medical information. As a third option, the state might choose to prevent genetic risk from being a factor in discrimination by providing a safety net of some sort for all citizens.

On the other hand, an increase in the number of tests available and the future possibility of individualized genetic testing using DNA chip technology⁵ will increase the pool of those potentially affected by such discrimination, supplying a powerful rationale for anti-discrimination legislation. However, growing uncertainty and difficulty of interpretation due to complex interactions between genes, the environment, and random "developmental noise"⁶, mean that the certainty of genetic diagnosis should not be overestimated.

Critics also claim that recent findings in medical genetics call into question the certainty of diagnoses based on genetic information.⁷ A positive test result can mean widely divergent expressions (in site, severity, and even the appearance of symptoms) for different diseases and different mutations within the same gene.

For example, over five hundred mutations in the cystic fibrosis (CF) gene have been reported -- yet particular mutations can produce a diverse range of symptoms in different patients. And because of the large number of rare mutations discovered, diagnosis may depend on where one is tested rather than the presence or absence of the mutation. The situation is further blurred when considering the fact that more common disorders, involving multiple genes as well as environmental factors, are even more difficult to predict accurately.

Since the definitive predictive value of genetic information is being called into question, GADL might be seen as serving the public's interest by protecting potentially erroneous information from being revealed.

Where to Start?

The rationale for treating genetic knowledge as uniquely predictive and worthy of protection needs to be further examined. What is required from the Canadian perspective is a rational reflection on GADL and the viability and feasibility of singling out genetic information. This would be an invaluable contribution to a well-informed, interdisciplinary debate on the merits of genetic information and individual privacy. A survey of similar legislation in other countries, combined with an analysis of public opinion, would also provide recommendations on policies for Canada to adopt. Canadian policy-makers could learn from the successes and failures of legislation in other states to fashion laws that take into account recent developments in genetics and informatics as well as public concerns.

It is important to note that biotechnology legislation is emerging as an important issue for governments around the world. GADL is currently being debated alongside legislation on embryonic stem cell research and human cloning. Given this, it would seem that policy consultation -- and even coordination -- among governments is a logical next step.

References:

1. Caulfield, T. 2000. "Underwhelmed: Hyperbole, regulatory policy, and the genetic revolution." Mc Gill Law Journal 45:437-460.

2. Lemmens, T. 2000. "Selective justice, genetic discrimination, and insurance: Should we single out genes in our laws?" McGill Law Journal 45:347-412.

3. ibid.

4. op. cit.

5. Henn, W. 1999. "Genetic screening with the DNA chip: A new Pandora's box?" Journal of Medical Ethics 25(2):200-204.

6. Lewontin, R.C. 1991. Biology as Ideology: The Doctrine of DNA. Toronto: Anansi.

7. Mate, G. 2000. "Decoding the hype." The Globe and Mail (Toronto), July 6, 2000, p. A15.

Upcoming Events

• Distance Education Course: PHEN is pleased to announce that the Distance Education Cource will once again be offered this winter. Watch upcoming issues of In Touch for further information regarding deadlines and registration, or visit PHEN's website at www.phen.ab.ca.
• Bioethics Week 2002: Bioethics Week 2002 has been tentatively scheduled for March 4th to 8th, 2002. Publicity and other materials will be available in early fall. Further details will be announced in In Touch, as well as on the Network's website.
• Canadian Bioethics Society: This year's Canadian Bioethics Society (CBS) Conference will be held in Winnipeg from October 11th to 14th, 2001. For further information, please visit the website at www.hsc.mb.ca/cbs2001, or call 204-235-3619.
• Upcoming Deadlines: User Fund: The next dealine for applications to PHEN's User Fund, which is used to support bioethics education and initiatives in Alberta, is September 1, 2001. Please contact PHEN's Northern Alberta office for more information.

Views offered in this article are those of the author and do not necessarily reflect the position of the Provincial Health Ethics Network.