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Human Genetics Studies: The Case for Group Rights

Published online by Cambridge University Press:  01 January 2021

Laura S. Underkuffler
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Extract

During the past 20 years, the importance of human genetic information has exploded. Whether sought for medical treatment, disease prediction studies, cultural studies, or the general study of human origins, human genetic information is now viewed as crucial for scientific research and general attempts at human understanding.

With the importance of genetic information have come bitter battles over its control. The demonstrated power of human genetic information has moved the issue of its “ownership” from the realm of musty academic musings to protracted political and legal battles among “source” individuals, researchers, commercial concerns, government agencies, and others. Whether collected through targeted scientific studies, “discarded” biological tissue, initial charitable bequest, or other means, genetic information and the biological materials in which it is contained have become the subject of protracted legal battles for control and intense social and ethical controversy.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 35 , Issue 3 , Fall 2007 , pp. 383 - 395
Copyright
Copyright © American Society of Law, Medicine and Ethics 2007

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References

See, e.g., Barker, J., “The Human Genome Diversity Project: ‘Peoples,’ ‘Populations,’ and the Cultural Politics of Identification,” Cultural Studies 8 (2004): 571–606, at 595 (discussing studies).CrossRefGoogle Scholar
See, e.g., Moore v. Regents of the University of California, 793 P.2d 479 (Cal. 1990), cert. denied, 499 U.S. 936 (1991).Google Scholar
See, e.g., Greenberg v. Miami Children's Hospital, 264 F. Supp. 2d 1064 (S.D. Fla. 2003) (donation of biological samples for Canavan disease research).Google Scholar
Cavalli-Sforza, L. et al., “Call for a Worldwide Survey of Human Genetic Diversity: A Vanishing Opportunity for the Human Genome Project,” Genomics 11 (1991): 490–491, at 491.CrossRefGoogle Scholar
See, e.g., Barker, , supra note 1, at 595; Bhat, A., “The National Institutes of Health and the Papua New Guinea Cell Line,” Cultural Survival Quarterly 20 (1996): 29–31. For discussion of the legal and ethical issues involved in such patenting projects, see Demaine, L. and Fellmeth, A., “Reinventing the Double Helix: A Novel and Nonobvious Reconceptualization of the Biotechnology Patent,” Stanford Law Review 55 (2002): 303-462; Whelan, M., “What, If Any, Are the Ethical Obligations of the U.S. Patent Office? A Closer Look at the Biological Sampling of Indigenous Groups,” Duke Law and Technology Review (2006): 14-28.Google Scholar
See Harry, D., “The Human Genome Diversity Project: Implications for Indigenous Peoples,” Abya Yala News 8 (1993): 13–15, at 14; Mead, A., “Genealogy, Sacredness, and the Commodities Market,” Cultural Survival Quarterly 20 (1996): 46–52, at 46–48.Google Scholar
See, e.g., Juengst, E., “Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless,” Kennedy Institute of Ethics Journal 8 (1998): 183–200; National Research Council, Evaluating Human Genetic Diversity (Washington, D.C.: National Academy Press, 1997): at 7–8. For a different view, see Greely, H., “Genes, Patents, and Indigenous Peoples: Biomedical Research and Indigenous Peoples' Rights,” Cultural Survival Quarterly 20 (1996): 54–59, at 57 (advocating an approach under which “the decision whether and what terms a population will participate in genetic research belongs to the group”).Google Scholar
See, e.g., id. (Juengst), at 187 (contrasting genetic populations and “self-identified, morally authoritative social groups”); Sharp, R. and Foster, M., “Involving Study Populations in the Review of Genetic Research,” Journal of Law, Medicine & Ethics 28, no. 1 (2000): 41–51, at 47 (describing the problem of the “nesting” of local and larger communities).CrossRefGoogle Scholar
See, e.g., id. (Sharp and Foster), at 47–48.Google Scholar
See, e.g., Juengst, , supra note 7, at 187 (arguing that genetic populations or human “demes” have no moral standing).Google Scholar
See, e.g., id. at 184 (accepting the idea of group control “would significantly complicate the work of population genomicists”); Sharp and Foster, supra note 8, at 49 (describing the costs and demands on researchers when formal community approval is required).Google Scholar
See Barker, , supra note 1, at 580 (such scientific projects involve confrontation “of indigenous rights to sovereignty and self-determination within the legal and scientific realms of law, policy, and protocol”).Google Scholar
See Juengst, , supra note 7, at 184 (footnotes omitted).Google Scholar
See, e.g., Buchanan, A., “Assessing the Communitarian Critique of Liberalism,” Ethics 99 (1989): 852–882, at 854; Walker, G., “The Idea of Nonliberal Constitutionalism,” in Shapiro, I. and Kymlicka, W., eds., Ethnicity and Group Rights: Nomos XXXIX (New York: New York University Press, 1997): 154–184, at 154–156. The claim that these theories in fact yield the individualistic conclusions commonly assumed is contested by others. See, e.g., MacCormick, N., Legal Rights and Social Democracy: Essays in Legal and Political Philosophy (Oxford: Clarendon Press, 1982): at 261 (“The Kantian ideal of respect for persons implies…an obligation in each of us to respect that which in others constitutes any part of their sense of their own identity.” For many people, identity includes participation in “cultural communit[ies,]…requir[ing] [their] protection and expression in appropriate institutional forms.”)Google Scholar
The absence of different conceptions of rights in Western jurisprudence is, of course, not always simply the result of philosophical oversight; often, those with power and influence have been keenly aware of the claims of groups and have deliberately eclipsed their interests. For instance, the omission of group rights in early United Nations documents was the product of a belief that political troublesome minorities in member states should not be given legal status and recognition. See Goldman, O., “The Need for an Independent International Mechanism to Protect Group Rights: A Case Study of the Kurds,” Tulsa Journal of Comparative and International Law 2 (1994): 45–89, at 51–53; Robinson, J., “International Protection of Minorities: A Global View,” Israeli Year Book on Human Rights 1 (1971): 61-91, at 77.Google Scholar
See, e.g., Doppelt, G., “Illiberal Cultures and Group Rights: A Critique of Multiculturalism in Kymlicka, Taylor, and Nussbaum,” Journal of Contemporary Legal Issues 12 (2002): 661–692 (arguing that legal recognition of cultural, ethnic, national, religious or other group rights is socially and politically divisive, and violates democratic egalitarian guarantees).Google Scholar
In a typical statement of this view, a prominent scholar argued:Google Scholar
See, e.g., Soifer, A., Law and the Company We Keep (Cambridge: Harvard University Press, 1995).Google Scholar
See Hartney, M., “Some Confusions Concerning Collective Rights,” Canadian Journal of Law and Jurisprudence 4 (1991): 293–314, at 312; see also Buchanan, , supra note 14.CrossRefGoogle Scholar
As Michael McDonald writes:Google Scholar
Id. (MacDonald), at 218, 220.Google Scholar
See, e.g., Amar, V. and Brownstein, A., “The Hybrid Nature of Political Rights,” Stanford Law Review 50 (1998): 915–1014; Rodriguez-Abascal, L., “On the Admissibility of Group Rights,” American Survey of International and Comparative Law 9 (2003): 101-110, at 102.CrossRefGoogle Scholar
See, e.g., Convention on the Means of Prohibiting and Preventing the Illicit Import, Export, and Transfer of Ownership of Cultural Property, November 14, 1970, 823 U.N.T.S. 231 (recognizing cultural property rights of nations and other groups).Google Scholar
See, e.g., Convention Against Discrimination in Education, art. 5, December 14, 1960, 429 U.N.T.S. 93 (recognizing minority population control of educational activities, including the maintenance of schools and the use in education of their own languages).Google Scholar
See, e.g., Declaration on the Elimination of All Forms of Intolerance and of Discrimination Based on Religion or Belief, art. 1, U.N. GOAR, 36th Sess., Supp. No. 51, U.N. Doc. A/36/684 (1981) (freedom of religion shall include individual belief and practice in community with others).Google Scholar
See Convention on the Prevention and Punishment of the Crime of Genocide, December 9, 1948, 78 U.N.T.S. 277; Alonzo-Maizlish, D., “In Whole or in Part: Group Rights, the Intent Element of Genocide, and the ‘Quantitative Criterion,’” New York University Law Review 77 (2002): 1369–1403, at 1375–1382.Google Scholar
See, e.g., Declaration of the Rights of Persons Belonging to National or Ethnic, Religious and Linguistic Minorities, art. 3, December 18, 1992, G.A. Res. 135, U.N. GAOR, U.N. Doc. A/RES/47/135 (1993); International Convention on the Elimination of All Forms of Racial Discrimination, March 7, 1966, 660 U.N.T.S. 195 (authorizing measures necessary to secure adequate advancement of certain racial and ethnic groups).Google Scholar
See, e.g., Convention (No. 169) Concerning Indigenous and Tribal Peoples in Independent Counties, International Labour Conference, June 27, 1989, available at <http://www.unhchr.ch/html/menu3/b/62.htm> (last visited May 19, 2006) (recognizing the rights of indigenous populations and the need to preserve their institutions, persons, property, and labor); U.N. Econ. & Soc. Council [ECOSOC], Sub. Comm. on Prevention of Discrimination & Prot. of Minorities, Draft United Nations Declaration on the Rights of Indigenous Peoples, art. 29, in Report, U.N. Doc. E/CN.4/Sub.2/1994/56/Annex to Res. 45 (October 28, 1994) (indigenous peoples “have the right to special measures to control, develop, and protect their sciences, technologies and cultural manifestations, including human and other genetic resources.”). As one scholar has observed, “international law is developing with particular attention to indigenous peoples in a way that is favorable to their demands.” Anaya, S., “Superpower Attitudes Toward Indigenous Peoples and Group Rights,” American Society of International Law Proceedings 93 (1999): 251–260, at 251; see also Wiessner, S., “Rights and Status of Indigenous Peoples: A Global Comparative and International Legal Analysis,” Harvard Human Rights Journal 12 (1999): 57-128.Google Scholar
For a general discussion of guarantees of group rights under international and foreign domestic laws, see Clinton, R., “The Rights of Indigenous Peoples as Collective Group Rights,” Arizona Law Review 32 (1990): 739–747, at 743–746; Goldman, , supra note 15, at 52–65; Lerner, N., Group Rights and Discrimination in International Law (The Hague, Netherlands: Kluwer Law International, 2003).Google Scholar
The rights of Indian tribes in the United States are grounded in historical documents that recognize rights of group autonomy, not individual freedoms. See id. (Clinton), at 745.Google Scholar
Affirmative action and other raceconscious remedies can be seen as efforts to address group-based interests that transcend individual injuries and the limitations of individual claims. See, e.g., Fiss, O., “Groups and the Equal Protection Clause,” Journal of Philosophy and Public Affairs 5 (1976): 107–177, at 171–172.Google Scholar
See, e.g., Gedicks, F., “Toward a Constitutional Jurisprudence of Religious Group Rights,” Wisconsin Law Review (1989): 99–169, at 129–137 (discussing judicial and legislative sensitivity to the prerogatives and needs of religious groups).Google Scholar
See Pogge, T., “Group Rights and Ethnicity,” in Ethnicity and Group Rights: Nomos XXXIX, supra note 14: 187–221, at 196–197 .Google Scholar
Cf. id., at 191–193 (discussing “group rights proper,” “group-specific rights,” and “group-statistical rights”).Google Scholar
Id., at 197.Google Scholar
See Sharp, and Foster, , supra note 8, at 41; Caplan, A., “Handle with Care: Race, Class, and Genetics,” in Murphy, T. and Luppé, M., eds., Justice and the Human Genome Project (Berkeley: University of Berkeley Press, 1994): 30–45, at 30–33.Google Scholar
See, e.g., Lerner, , supra note 29, at 36.Google Scholar
Indeed, as one scholar has noted, even “indigenous peoples” and “indigenous populations” – which are widely used in international law – are contested terms. See Anaya, , supra note 28, at 251.Google Scholar
See Pogge, , supra note 33, at 193–194. Other theorists stressing similar factors in group recognition include Addis, A., “Individualism, Communitarianism, and the Rights of Ethnic Minorities,” Notre Dame Law Review 67 (1992): 615–676, at 656 (citing shared history and culture); Statement of UNESCO Meeting of Experts on Further Study of the Rights of Peoples (Paris, February 1990), quoted in Goldman, , supra note 15, at 48 (citing common historical tradition, racial or ethnic identity, cultural homogeneity, linguistic unity, religious or ideological affinity, territorial connection, and/or common economic life).Google Scholar
See Lerner, , supra note 29, at 36.Google Scholar
See, e.g., id., at 36, 39.Google Scholar
Id., at 36–38.Google Scholar
Id.Google Scholar
Id. Lerner argues that under international law, recognized groups involve factors that are beyond the control of members; voluntary associations are not recognized. See id., at 36–39.Google Scholar
See McDonald, , supra note 20, at 218.Google Scholar
Id., at 219; Fiss, , supra note 31, at 148. See also Statement of UNESCO Meeting, supra note 39, quoted in Goldman, , supra note 15, at 48 (“‘The group as a whole must have the will to be identified as a people or the consciousness of being a people - allowing that groups or some members of such group[s], though sharing [other required]…characteristics, may not have the will or consciousness.’”)Google Scholar
Id. (Fiss), at 148.Google Scholar
See, e.g., Statement of UNESCO Meeting, supra note 39, quoted in Goldman, , supra note 15, at 48.Google Scholar
See Pogge, , supra note 33, at 194–195.Google Scholar
Id., at 195.Google Scholar
See Nickel, J., “Group Agency and Group Rights,” in Ethnicity and Group Rights: Nomos XXXIX, supra note 14: 235–256, at 235.Google Scholar
Id. See also Statement of UNESCO Meeting, supra note 39, quoted in Goldman, , supra note 15, at 48 (“Possibly, the group must have institutions or other means of expressing its common characteristics and will for identity.”)Google Scholar
See Sharp, and Foster, , supra note 8, at 47.Google Scholar
For instance, “there is no uniformly accepted definition [in international law] for a ‘minority’ [group], despite the dominance of its use.” See Goldman, , supra note 15, at 47 (footnote omitted). The most widely accepted definition identifies a minority group as “[a] group numerically inferior to the rest of the population of a State, in a non-dominant position, whose members…possess [distinctive] ethnic, religious or linguistic characteristics…, and show, if only implicitly, a sense of solidarity, directed towards preserving their culture, traditions, religion, or language.” Capotorti, F., “Study on the Rights of Persons Belonging to Ethnic, Religious and Linguistic Minorities,” U.N. Doc. E/CN.4/Sub. 2/384/Rev.1, U.N. Sales No. E.78.XIV.1 (New York: United Nations, 1979): at 96. This obviously leaves many questions unanswered.Google Scholar
See Juengst, , supra note 7, at 187.Google Scholar
Laurie, G., “Challenging Medical-Legal Norms: The Role of Autonomy, Confidentiality, and Privacy in Protecting Individual and Familial Group Rights in Genetic Information,” Journal of Legal Medicine 22 (2001): 1–54.CrossRefGoogle Scholar
Id., at 3.Google Scholar
Id.Google Scholar
Id. Diseases for which genetic predispositions have already been identified include cystic fibrosis, adult onset polycystic kidney disease, Huntington's chorea, Alzheimer's disease, breast can cer, muscular dystrophy, sickle-cell anemia, and others. See Peters, D., “Risk Classification, Genetic Testing, and Health Care A Conflict Between Libertarian and Egalitarian Values?” in Peters, T., ed., Genetics: Issues of Social Justice (Cleveland: The Pilgrim Press, 1998): 205–217, at 205; Peters, T., “Genes, Theology and Social Ethics: Are We Playing God?” in id.: 1–45, at 3.Google Scholar
See Laurie, , supra note 56, at 3.Google Scholar
Id., at 3–4.Google Scholar
Id., at 11–13. See also Kevles, D., In the Name of Eugenics. Genetics and the Uses of Human Heredity (New York: Alfred A. Knopf, 1985): at 297–298 (citing studies).Google Scholar
See Peters, , supra note 59, at 4 (footnotes omitted) (“Among For tune's 500 top companies, twelve already report using genetic testing for employment purposes….Underwriters already deny or limit coverage to gene-related conditions such as sickle-cel anemia, atherosclerosis, Huntington's disease, Down syndrome and muscular dystrophy….Individuals with genetic predispositions to expensive diseases may become unemployable, unin sured, and finally unable to acquire medical care.”) See also Billings, P et al., “Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics 50 (1992): 476–482, at 476 (genetic discrimination and stigmatization “exists and is manifested in many social institutions, especially in the health and life insurance industries.”)Google Scholar
Cf. Genetic Privacy Act (GPA), §3 (m), available at <http:/www.ornl.gov/sci/techresources/Human_Genome/resource/privacy/privacy2.html> (last visited May 21, 2006) (“private genetic information” subject to the Act's proposed safeguard includes “any information about an identifiable individual the is derived from the presence, absence, alteration, or mutation of a gene or genes, or the presence or absence of a specific DNA marker or markers, and which has been obtained: (1) from an analysis of the individual's DNA; or (2) from an analysis of the DNA of a person to whom the individual is related.”)+(last+visited+May+21,+2006)+(“private+genetic+information”+subject+to+the+Act's+proposed+safeguard+includes+“any+information+about+an+identifiable+individual+the+is+derived+from+the+presence,+absence,+alteration,+or+mutation+of+a+gene+or+genes,+or+the+presence+or+absence+of+a+specific+DNA+marker+or+markers,+and+which+has+been+obtained:+(1)+from+an+analysis+of+the+individual's+DNA;+or+(2)+from+an+analysis+of+the+DNA+of+a+person+to+whom+the+individual+is+related.”)>Google Scholar
See Juengst, , supra note 7, at 187.Google Scholar
See Struewing, J. et al., “The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA2 among Ashkenaz Jews,” New England Journal of Medicine 336, no. 20 (1997) 1401–1408.CrossRefGoogle Scholar
Id., at notes 37–54.Google Scholar
See Juengst, , supra note 7, at 187.Google Scholar
See, e.g., Barker, , supra note 1, at 587–597; Christie, J., “Whose Property, Whose Rights?” Cultural Survival Quarterly 20 (1996): 34–41; Whitt, L., “Cultural Imperialism and the Market ing of Native America,” American Indian Culture and Research Journal 19 (1995): 1–31, at 17–19.Google Scholar
See Juengst, , supra note 7, at 189.Google Scholar
See id., at 190. As Joanne Barker describes the original design of the Human Genome Diversity Project:Google Scholar
See, e.g., Barker, , supra note 1, at 597–598 (discussing fears articulated by the National Research Council, that DNA samples might be used against donors and their communities – for instance, for denial of health insurance to members of groups found to be “genetically predisposed” to disease). “Distinctive populations” in which potentially stigmatizing diseases have already been found include the Old Order Amish (mental illness) and the Pima tribe in Arizona (diabetes). For discussions of these findings, see Greely, , supra note 7, at 54–55.Google Scholar
See, e.g., Barker, , supra note 1, at 585, 591–92, 595; Christie, , supra note 69, at 35–36; Mead, , supra note 6, at 48.Google Scholar
See, e.g., Barker, , supra note 1, at 594; Grounds, R., “The Yuchi Community and the Human Genome Diversity Project: Historic and Contemporary Ironies,” Cultural Survival Quarterly 20 (1996): 64–68, at 64.Google Scholar
See Barker, , supra note 1, at 578, 580 (“[Indigenous] [p]eoples demand historicity, politicality and the recognition of their legal stakes in being articulated as such.” Their claim “is to the entrenchment of indigenous rights to sovereignty and self-determination within the legal and scientific realms of law, policy, and protocol.”).Google Scholar
See Mead, , supra note 6, at 48, 49–50.Google Scholar
See, e.g., Sunder, M., “Intellectual Property and Identity Politics: Playing with Fire,” Journal of Gender, Race and Justice 4 (2000): 69–98, at 76.Google Scholar
Sunder, M., “Cultural Dissent,” Stanford Law Review 54 (2001): 495–567, at 522–523.Google Scholar
Id., at 509.Google Scholar
Id., at 510 (emphases deleted).Google Scholar
Id., at 503.Google Scholar
Id. (footnote omitted) (emphasis deleted).Google Scholar
See, e.g., Pellegrino, E., “Intersections of Western Biomedical Ethics and World Culture: Problematic and Possibility,” Cambridge Quarterly of Healthcare Ethics 1 (1992): 191–196, at 194.CrossRefGoogle Scholar
See Levine, R., “Informed Consent: Some Challenges to the Universal Validity of the Western Model,” Law, Medicine & Health Care 19 (1991): 207–213, at 209–210; Clinton, , supra note 29, at 742. (For many Indians and many non-Westerners, “human beings are born into a closely linked and integrated network of family, kinship, social and political relations. One's clan, kinship, and family identities are part of one's personal identity and one's rights and responsibilities exist only within the framework of such…networks.”)CrossRefGoogle Scholar
See Sharp, and Foster, , supra note 8, at 43.Google Scholar
See Laurie, , supra note 56, at 48.Google Scholar
See Barker, , supra note 1, at 573, 598; Dougherty, T., “Group Rights to Cultural Survival: Intellectual Property Rights in Native American Cultural Symbols,” Columbia Human Rights Law Review 29 (1998): 235–400, at 369–372.Google Scholar
They have also been raised in other contexts. See, e.g., Moustakas, J., “Group Rights in Cultural Property: Justifying Strict Inalienability,” Cornell Law Review 74 (1989): 1179–1227, at 1179, n.2 (discussing arguments that retention of plundered art is justified because it is “the common heritage of mankind”).Google Scholar
Human Genome Diversity Project Summary Document, Porto Conte, Sardini Workshop, quoted in Grounds, supra note 74, at 65.Google Scholar
In the early 1990s, NIH researchers found that some members of the Hagahai people of Papua New Guinea were infected with a previously unknown viral strain of HTLV-1. A cell line was developed from the human cells, and a patent was sought. U.S. Patent no. 5,397,696, called the “Papua New Guinea human T- lymphotropic virus,” was issued on March 14, 1995. The ensuing controversy is chronicled in Cultural Survival Quarterly 20 (1996): 37–41 (statements by Rural Advancement Foundation International [RAFI], Jonathan Friedlaender, Henry T. Greely, Dominic Sengi, and others).Google Scholar
See Mead, , supra note 6, at 50.Google Scholar
See Whitt, , supra note 69, at 14–15 (footnotes omitted).Google Scholar