Hostname: page-component-848d4c4894-m9kch Total loading time: 0 Render date: 2024-05-02T15:06:56.581Z Has data issue: false hasContentIssue false
  • English
  • Français

Population Genomics and Research Ethics with Socially Identifiable Groups

Published online by Cambridge University Press:  01 January 2021

Joan L. McGregor
Get access Rights & Permissions [Opens in a new window]

Extract

The genetic revolution is well underway, with genetic research and knowledge expanding at an exponential rate. Much of the new genetics research is focused on population groups, and proponents of “population genomics” argue that such studies are necessary since genetic “variation” among human populations holds the most promise for technological innovations that can improve human health and lead to increased understanding of the origin of human populations. Population genomic research thus targets specific groups to discover variation that could lead to knowledge about genetic disorders, possible cures, and the origin and migration patterns of distinctive peoples. Research on genetic differences among groups or populations, however, raises many pressing ethical and legal questions. For example, focus on biological differences of racial and ethnic groups has in the past lead to assumptions about superiority and inferiority between groups, and in practice resulted in stigmatization and discrimination. Consequently, attention on groups should raise legal and moral red flags and compel us to move cautiously in this area. Pragmatically, targeting population groups as the object of study requires the determination of the nature and scope of “population groups” for purposes of genetics research.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 35 , Issue 3 , Fall 2007 , pp. 356 - 370
Copyright
Copyright © American Society of Law, Medicine and Ethics 2007

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Greely, H. T., “Informed Consent and Other Ethical Issues in Human Population Genetics,” Annual Review of Genetics 35 (2001): 785–800.CrossRefGoogle Scholar
Greely, H. T., “The Legal, Ethical, and Social Issues in Human Genome Research,” Annual Review of Anthropology 27 (1998): 473–502.CrossRefGoogle Scholar
Plessy v. Ferguson, 163 U.S. 537, (1896), No. 210. Historically, see Carl Linnaeus's 18th-century classifications of the four races.” These categories are Americanus, Asiaticus, Africanus, and Europeanus. They were based on place of origin at first, and later skin color. Each race had certain characteristics that were endemic to individuals belonging to it. Native Americans were reddish, stubborn, and angered easily. Africans were black, relaxed, and negligent. Asians were sallow, avaricious, and easily distracted. Europeans were white, gentle, and inventive. See entry on Carolus Linnaeus available at <http://www.reference.com/browse/wiki/Carolus_Linnaeus> (last visited June 4, 2007). (last visited June 4, 2007).' href=https://scholar.google.com/scholar?q=Plessy+v.+Ferguson,+163+U.S.+537,+(1896),+No.+210.+Historically,+see+Carl+Linnaeus's+18th-century+classifications+of+the+four+races.”+These+categories+are+Americanus,+Asiaticus,+Africanus,+and+Europeanus.+They+were+based+on+place+of+origin+at+first,+and+later+skin+color.+Each+race+had+certain+characteristics+that+were+endemic+to+individuals+belonging+to+it.+Native+Americans+were+reddish,+stubborn,+and+angered+easily.+Africans+were+black,+relaxed,+and+negligent.+Asians+were+sallow,+avaricious,+and+easily+distracted.+Europeans+were+white,+gentle,+and+inventive.+See+entry+on+Carolus+Linnaeus+available+at++(last+visited+June+4,+2007).>Google Scholar
Juengst, E. T., “Group Identity and Human Diversity: Keeping Biology Straight from Culture,” American Journal of Genetics 63, no. 3 (1998): 673–677; Juengst, E. T., “Groups as Gatekeepers to Genomics Research: Conceptually Confusing, Morally Hazardous, and Practically Useless,” Kennedy Institute of Ethics Journal 8, no. 2 (1998): 183–200.CrossRefGoogle Scholar
See Pence, G., “The Tuskegee Study,” in Classic Cases in Medical Ethics (New York: McGraw-Hill, 1995).Google Scholar
Shavers, V. L., Lynch, C. F. and Burmeister, L. F., “Racial Differences in Factors That Influence the Willingness to Participate in Medical Research Studies,” Annals of Epidemiology 12, no. 4 (2002): 248–256; Alvidrez, J. and Arean, P. A., “Psychosocial Treatment Research with Ethnic Minority Populations: Ethical Considerations in Conducting Clinical Trials,” Ethics & Behavior 12, no. 1 (2002): 103-116.CrossRefGoogle Scholar
See Peltonen, L., Palotle, A. and Lange, K., “Use of Populations Isolates for Mapping Complex Traits,” Nature Reviews Genetics 1, no. 3 (December 2000): 182–90; Cann, R., “Genetics Clue to Dispersal in Human Populations: Retracing the Past from the Present,” Science 291, no. 5509 (March 2, 2001): 1742-1748.CrossRefGoogle Scholar
Indian Health Service, Indian Health Service, U.S. Department of Health and Human Services, Regional Differences in Indian Health, 2000–2001, 2003.Google Scholar
Id.Google Scholar
Warne, D., “Genetic Research in American Indian Communities: Sociopolitical Considerations and Participatory Research,” Jurimetrics 45 (2005): 191–203; United States Commission on Civil Rights, Press Release, 2003, available at <http://www.usccr.gov/press/archives/2003/100803.htm> (last visited May 8, 2007).Google Scholar
Id. (Warne); Warne, D., “Research and Educational Approaches to Reducing Health Disparities among American Indians and Alaska Natives,” Journal of Transcultural Nursing 17, no. 3 (2006): 266–271CrossRefGoogle Scholar
“Declaration of Indigenous Peoples of the Western Hemisphere Regarding the Human Genome Diversity Project,” February 19, 1995, available at <http://www.tebtebba.org/tebtebba_files/susdev/bdv/iphgdp.html> (last visited June 12, 2007).+(last+visited+June+12,+2007).>Google Scholar
See Warne, , supra note 10.Google Scholar
Colomeda, L. A. and Wenzel, E. R., “Medicine Keepers: Issues in Indigenous Health,” Critical Public Health 10, no. 2 (2000): 243–256.CrossRefGoogle Scholar
Sharp, R. R. and Foster, M. W., “An Analysis of Research Guidelines on the Collection and Use of Human Biological Materials form American Indian and Alaskan Native Communities,” Jurimetrics 42 (2002): 165–186; Foster, M. W. and Sharp, R. R., “Race, Ethnicity, and Genomics: Social Classifications as Proxies of Biological Heterogeneity,” Genome Research 12 (2002): 844-850; Freeman, W. L. and Romero, F. C., “Community Consultation to Identify Group Risk,” in Amdur, R. J. and Bankert, E. A., eds., Institutional Review Board: Management and Function (Sudbury, MA: Jones and Bartlett Publishers, 2005).Google Scholar
Reardon, J., “The Human Genome Diversity Project: A Case Study in Coproduction,” Social Studies of Science 31, no. 3 (2001): 357–388.CrossRefGoogle Scholar
Adalsteinsson, R., “Human Genetic Databases and Liberty,” The Juridical Review 1 (2004): 65–74.Google Scholar
Tzortzis, A., “Estonia Looks to Make Mark with DNA Data,” Boston Globe, August 19, 2003 at E1Google Scholar
See Winikoff, D., “Partnership in U.K. Biobank: A Third Way For Genomic Property?” Journal of Law, Medicine & Ethics 35, no. 3 (2007): 440–456.CrossRefGoogle Scholar
Godard, B., Marshall, J., Laberge, C. and Knoppers, B. M., “Strategies for Consulting with Community: The Cases of Four Large Scale Genetic Databases,” Science and Engineering Ethics 10, no. 3 (2004): 457–477.CrossRefGoogle Scholar
Lehrman, S., “Jewish Leaders Seek Genetic Guidelines,” Nature 389 (1997): 322; Lehmann, L. S., Weeks, J. C., Klar, N. and Garber, J. E., “A Population-Based Study of Ashkenazi Jews Women's Attitudes toward Genetic Discrimination and BRCA1/2 Testing,” Genetics in Medicine 4, no. 5 (2002): 346-352; Schwartz, M. D., Rothenberg, K., Joseph, L., Benkendorf, J. and Lerman, C., “Consent to the Use of Stored DNA for Genetics Research: A Survey of Attitudes in the Jewish Population,” American Journal of Medical Genetics 98, no. 4 (2001): 336-342; Rothenberg, K. H. and Rutkin, A. B., “Toward a Framework of Mutualism: The Jewish Community in Genetics Research,” Community Genetics 1, no. 3 (1998): 148-152.CrossRefGoogle Scholar
See <http://www.genomecenter.howard.edu/intro.htm> (last visited June 12, 2007).+(last+visited+June+12,+2007).>Google Scholar
Peltonen, L., Palotie, A. and Lange, K., “Use of Population Isolates for Mapping Complex Traits,” Nature Reviews Genetics 1, no. 3 (2000): 182–190.CrossRefGoogle Scholar
Chakravarti, A., “Population Genetics – Making Sense out of Sequence,” Nature Genetics 21, Supplement 1 (1999): 56–60; see Foster, and Sharp, (2002), supra note 15.CrossRefGoogle Scholar
Struewing, J. P., Hartge, P., Wacholder, S., Baker, S. M., Berlin, M., McAdams, M., Timmerman, M. M., Brody, L. C. and Tucker, M. A., “The Risk of Cancer Associated with Specific Mutations of BRCA1 and BRCA2 among Ashkenazi Jews,” New England Journal of Medicine 336, no. 20 (1997): 1401–1408; Malik, K., “Is This the Future We Really Want? Different Drugs for Different Races,” London Times, June 18, 2005, at Features, 25.CrossRefGoogle Scholar
See Reardon, , supra note 16, at 361.Google Scholar
Cavalli-Sforza, L. L., “Studying Diversity,” EMBO Report 6, no. 8 (2005): at 713; Cavalli-Sforza, L. L., “The Human Genome Diversity Project: Past, Present and Future,” Nature Reviews Genetics 6, no. 4 (2005): 333-340.CrossRefGoogle Scholar
See Reardon, , supra note 16, at 357.Google Scholar
North American Regional Committee, “Proposed Model Ethical Protocol for Collecting DNA Samples – Draft,” October 1995, at 9. This draft was later published with very few changes in the Houston Law Review. North American Regional Committee of the Human Genome Diversity Project, “Proposed Model Ethical Protocol for Collecting DNA Samples,” Houston Law Review 33 (1997): 1431–1473.Google Scholar
Grounds, R. A., “The Yuchi Community and the Human Genome Diversity Project: Historic and Contemporary Ironies,” Cultural Survival Quarterly 20 (1996): 64–68; see Juengst, , supra note 4.Google Scholar
TallBear, K., “Can DNA Determine Who Is American Indian?” Indian Country Today, December 3, 2003, available at <http://www.indiancountry.com/content.cfm?id=1070457107> (last visited May 8, 2007); TallBear, K., Bolnick, D. A., “Native American DNA Tests: What Are the Risks to Tribes?” Native Voice, December 3–17, 2004, at D2.+(last+visited+May+8,+2007);+TallBear,+K.,+Bolnick,+D.+A.,+“Native+American+DNA+Tests:+What+Are+the+Risks+to+Tribes?”+Native+Voice,+December+3–17,+2004,+at+D2.>Google Scholar
See Reardon, , supra note 16.Google Scholar
Kegley, J. A., “Using Genetic Information: The Individual and the Community,” Medicine and Law 15, no. 3 (1996): 377–389.Google Scholar
See the article published in The Economist where it says that Cavalli-Sforza, “challenges the assumption that there are significant genetic differences between human races, and indeed, the idea that ‘race’ has any useful biological meaning at all.” The Economist 356, no. 8177 (2000): Special Section 3, at 1. (No author is credited.)Google Scholar
See TallBear, K., “Narratives of Race and Indigeneity in the Genographic Project,” Journal of Law, Medicine & Ethics 35, no. 3 (2007): 412–426.CrossRefGoogle Scholar
Harmon, A., “DNA Gatherers Hit Snag: Tribes Don't Trust Them,” New York Times, December 10, 2006. Sunday Correction Appended, Late Edition - Final, Section 1, at 1.Google Scholar
Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, vol. 2 (Washington, D. C.: U.S. Government Printing Office, 1949): 181–182.Google Scholar
Id.Google Scholar
Id.Google Scholar
Id.Google Scholar
See <http://www.wma.net/e/policy/b3.htm> (last visited June 12, 2007).+(last+visited+June+12,+2007).>Google Scholar
45 C.F.R. 46Google Scholar
Even though the study was supposed to involve only patients with tertiary syphilis which has a low infection rate, “by the end of the experiment, 28 of the men had died directly of syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis.” Available at <http://www.infoplease.com/ips/A0762136.html> (last visited May 8, 2007).+(last+visited+May+8,+2007).>Google Scholar
Francis, L. et al., “How Infectious Disease Got Left Out – And What This Omission Might Have Meant for Bioethics,” Bioethics 19, no. 4 (2005): 287–322.CrossRefGoogle Scholar
National Bioethics Advisory Commission, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, Rockville, Maryland, 1999.Google Scholar
Weijer, C. and Anderson, J., “A Critical Appraisal of Protections for Aboriginal Communities in Biomedical Research” Jurimetrics 42 (2002): 187.Google Scholar
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.CrossRefGoogle Scholar
Annas, G. J., Glantz, L. H. and Roche, P. A., “The Genetic Privacy Act and Commentary,” available at <http://www.ornl.gov/sci/techresources/Human_Genome/resource/privacy/privacy1.html> (last visited May 8, 2007).+(last+visited+May+8,+2007).>Google Scholar
Jeffrey Landrigan filed a federal habeas corpus petition in 2006 arguing that he has a genetic predisposition to crime, which should have been introduced as mitigating evidence in his sentencing hearing.Google Scholar
See Collin's statement, “This is the kind of occasion where one day you'll be able to tell your grandkids that you were in the auditorium on Feb. 12, 2001, to celebrate the first reading of the book of life.” McManus, R., “Symposium Puts ‘Gee’ in Genome Consortium Scientists Parse ‘Book of Life,’” available at <http://www.nih.gov/news/NIH-Record/03_06_2001/story01.htm> (last visited June 12, 2007). (last visited June 12, 2007).' href=https://scholar.google.com/scholar?q=See+Collin's+statement,+“This+is+the+kind+of+occasion+where+one+day+you'll+be+able+to+tell+your+grandkids+that+you+were+in+the+auditorium+on+Feb.+12,+2001,+to+celebrate+the+first+reading+of+the+book+of+life.”+McManus,+R.,+“Symposium+Puts+‘Gee’+in+Genome+Consortium+Scientists+Parse+‘Book+of+Life,’”+available+at++(last+visited+June+12,+2007).>Google Scholar
Moore v. Regents of the University of California 793 P.2d 479 (Cal. 1990); and see Freeman, W. L., “What Are the Possible Harms in Genetic Research?” available at <www.npaihb.org/epi/irb/gen-harm_fr.doc> (last visited June 12, 2007).+(last+visited+June+12,+2007).>Google Scholar
Dalton, R., “Tribe Blasts ‘Exploitation’ of Blood Samples,” available at <http://www.nature.com/nature/journal/v420/n6912/full/420111a.html> (last visited May 8, 2007).CrossRef+(last+visited+May+8,+2007).>Google Scholar
A study conducted in a Native Alaskan community about alcoholism had the effect, when the research was published, of having the town's bond rating reduced, making it difficult and expensive to get money for the community.Google Scholar
See Tsosie, R., “Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm,” Journal of Law, Medicine & Ethics 35, no. 3 (2007): 396–411; see also Native American Graves Protection and Repatriation Act (NAGPRA), available at <http://www.nps.gov/history/nagpra/ (last visited May 8, 2007).CrossRefGoogle Scholar
See Freeman, and Romero, , supra note 15.Google Scholar
Davis, D. S., “Genetic Research and Communal Narratives” Hasting Center Report 34, no. 4 (2004): 40–49.CrossRefGoogle Scholar
See Tilousi v. Arizona State University Board of Regents, No. 04-CV-1290-PCT-FJM (2005).Google Scholar
See Rebecca Tsosie's account of cultural harms supra note 54.Google Scholar
Id.Google Scholar
Margalit, A. and Halbertal, M., “Liberalism and the Right to Culture,” Social Research 61, no. 3 (Fall 1994): 529–548.Google Scholar
For a more complete understanding and development of this concept, see the argument in Tsosie supra note 54.Google Scholar
Many scholars have discussed the tendency to represent and interpret others (different nations, races, cultures, gender) through our own values and to see our values and perspectives as “universal” and “objective.” See, for example, Said, E., Orientalism: Western Concepts of the Orient (New York: Penguin, 1991).Google Scholar
“In the ‘doll test,’ psychologists Kenneth and Mamie Clark used four plastic, diaperclad dolls, identical except for color. They showed the dolls to black children between the ages of three and seven and asked them questions to determine racial perception and preference. Almost all of the children readily identified the race of the dolls. However, when asked which they preferred, the majority selected the white doll and attributed positive characteristics to it. The Clarks also gave the children outline drawings of a boy and girl and asked them to color the figures the same color as themselves. Many of the children with dark complexions colored the figures with a white or yellow crayon. The Clarks concluded that ‘prejudice, discrimination, and segregation’ caused black children to develop a sense of inferiority and self-hatred.” Available at <http://www.loc.gov/exhibits/brown/brown-brown.html> (last visited May 8, 2007).+(last+visited+May+8,+2007).>Google Scholar
See Tsosie, supra note 54.Google Scholar
Ingram, D., Group Rights: Reconciling Equality and Difference (Lawrence, KS: University Press of Kansas, 2001); Shapiro, I. and Kymlicka, W., eds., Ethnicity and Group Rights (New York: New York University Press, 1997).Google Scholar
See the Journal of Social Philosophy 37, no. 3 (2006) for discussions on reparations.Google Scholar
See Tilousi v. Arizona State University Board of Regents, No. 04-CV-1290-PCT-FJM (2005): at 7. “The aforementioned studies, experiments, and projects resulted in…theories about ancient human populations migrations from Asia to North America, all to the harm and detriment of Plaintiffs and others similarly situated whose religious and culture is based on the premise and profound belief that their origins as a people come from ‘Red Butte’ located in the Grand Canyon.”Google Scholar
Id.Google Scholar
Id.Google Scholar
Reilly, P. R., “Rethinking Risks to Human Subjects in Genetics Research,” American Journal of Human Genetics 63, no. 3 (1998): 682–685.CrossRefGoogle Scholar
Id., at 684.Google Scholar
See Askland, A., “A Caution to Native American Institutional Review Boards about Scientism and Censorship” Jurimetrics 42, no. 2 (2002): 159–164.Google Scholar
See Harris, J., “Scientific Research Is a Moral Duty,” Journal of Medical Ethics 31, no. 4 (2005): 242–248. Given the health disparities in minority communities and the lack of medical resources that go into minority communities, the fair share argument may not be a very good one.CrossRefGoogle Scholar
See Dalton, R. “When Two Tribes Go to War,” Nature 430, no. 6999 (July 29, 2004): 500–502.CrossRefGoogle Scholar
Andrews, L., “Havasupai Tribe Sues Genetic Researchers,” Law & Bioethics Report 4, no. 10 (2004): 511–521 (lab report from Louisville, 2004).Google Scholar
Weijer, C., Goldsand, G., Emmanuel, E., “Protecting Communities in Research: Current Guidelines and Limits of Extrapolation,” Nature Genetics 23 (1999): at 277; see Sharp, , Foster, , supra note 47, at 52–54.CrossRefGoogle Scholar
Id. (Sharp and Foster).Google Scholar
Juengst, E. T., “Community: What ‘Community Review’ Can and Cannot Do,” Journal of Law, Medicine & Ethics 28, no. 1 (2000): 52–4, at 53.CrossRefGoogle Scholar
See Weijer, et al., supra note 56.Google Scholar
Kipnis, K., King, N. and Nelson, R., “Trials and Errors: Barriers to Oversight of Research Conducted Under the Emergency Research Consent Waiver,” IRB 28, no. 2 (March-April 2006): 16–19.Google Scholar
Arizona State University, Procedures for the Review of Human Subjects Research, last approval date January 5, 2007.Google Scholar
See the Model Tribal Research Code, American Indian Law Center, Inc.Google Scholar
United States Department of Health and Human Services, 1991 Protection of Human Subjects, Title 45 Code of Federal Regulations Part 1014.Google Scholar
45 C.F.R. 46. 102 (f).Google Scholar
45 C.F.R. 46. 102 (f) (2).Google Scholar
See Office for Human Research Protections and Department of Health and Human Services, Guidance on Research Involving Coded Private Information or Biological Samples OHRP, August 10, 2004, available at <www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf> (last visited May 8, 2007).+(last+visited+May+8,+2007).>Google Scholar
Charo, R. Alta, “Body of Research – Ownership and Use of Human Tissue,” New England Journal of Medicine 355, no. 15 (2006): 1518–1520, at 1518.CrossRefGoogle Scholar
See National Bioethics Advisory Commission, supra note 45, at 58–60.Google Scholar
Other examples of biological samples taken from indigenous peoples and used for projects without their consent include: The Yamomani of southern Venezuela and northern Brazil, who are seeking to have returned to them blood samples that were collected in the 1960s. Those samples have been used for many genetics research projects without the consent of the people or the tribal communities. And the United States government filed a patent claim for the cell line of a Guaymi woman from Panama. Later with some public outcry, the claims were withdrawn. The tribal president of the Guaymi claimed that he “never imagined that people would patent plants and animals. It's fundamentally immoral, contrary to the Guaymi view of nature, and our place it. To patent human material…to take human DNA and patent its products…that violates the integrity of life itself, and our deepest sense of morality.” Andrews, L., Mehlman, M. and Rothstein, M., Genetics: Ethics, Law, and Policy (St. Paul: M Na West Law School, 2006): at 143.Google Scholar