The role of community review in evaluating the risks of human genetic variation research

American Journal of Human Genetics

Volumn 64, Issue 6, 1999, Pages 1719-1727

  Foster, Morris W ^a   Sharp, Richard R ^b   Freeman, William L ^c   Chino, Michelle ^d   Bernsten, Deborah ^a   Carter, Thomas H ^e  

^a UNIVERSITY OF OKLAHOMA   (United States)

^b NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES   (United States)

^c INDIAN HEALTH SERVICE   (United States)

^d Albuquerque Indian Health Board   (United States)

^e UNIVERSITY OF OKLAHOMA COLLEGE OF MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; COMMUNITY; CULTURAL FACTOR; DECISION MAKING; GENETIC RISK; GENETIC VARIABILITY; HEALTH CARE; HUMAN; PRIORITY JOURNAL; RESEARCH; SOCIAL ASPECT;

EID: 0033358544     PISSN: 00029297     EISSN: None     Source Type: Journal    
DOI: 10.1086/302415     Document Type: Article

References (43)

1. American Jewish Congress (1998) Genetic diseases and the Jewish community: a clarification. Congress Monthly (American Jewish Congress) July/August:3-7
2. Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG (eds) (1994) Assessing genetic risks: implications for health and social policy. National Academy Press, Washington, DC
3. Annas GJ, Elias S (1992) The major social policy issues raised by the Human Genome Project. In: Annas GJ, Elias S (eds) Gene mapping: using law and ethics as guides. Oxford University Press, New York, pp 3-17
4. Beauchamp TL, Childress JF (1994) Principles of biomedical ethics, 4th ed. Oxford University Press, New York
5. Billings PR, Kohn MA, de Cuevas M, Beckwith J, Alper JS, Natowicz MR (1992) Discrimination as a consequence of genetic testing. Am J Hum Genet 50:476-482
6. Brown PO, Hartwell L (1998) Genomics and human disease - variations on variation. Nat Genet 18:91-93
7. Caplan AL (1994) Handle with care: race, class, and genetics. In: Murphy TF, Lappé MA (eds) Justice and the Human Genome Project. University of California Press, Berkeley, pp 30-45
8. Collins FS, Brooks LD, Chakravarti A (1998) A DNA polymorphism discovery resource for research on human genetic variation. Genome Res 8:1229-1231
9. Collins FS, Guyer MS, Chakravarti A (1997) Variations on a theme: cataloging human DNA sequence variation. Science 278:1580-1581
10. Committee on Human Genome Diversity, National Research Council (1997) Evaluating human genetic diversity. National Academy of Science, Washington, DC
11. Douglas M (1966) Purity and danger. Praeger, New York
12. Faden RR, Beauchamp TL (1986) A history and theory of informed consent. Oxford University Press, New York
13. Fanos JH, Johnson JP (1995) Perception of carrier status by cystic fibrosis siblings. Am J Hum Genet 57:431-438
14. Foster MW, Bernsten D, Carter TH (1998) A model agreement for genetic research with socially identifiable populations. Am J Hum Genet 63:696-702
15. Foster MW, Freeman WL (1998) Naming names in human genetic variation research. Genome Res 8:755-757
16. Freeman HP (1998a) The meaning of race in science - considerations for cancer research: concerns of special populations in the National Cancer Program. Cancer 82: 219-25
17. Freeman WI. (1998b) The role of community in research with stored tissue samples. In: Weir R (ed) Stored tissue samples: ethical, legal, and public policy implications. University of Iowa Press, Iowa City, pp 267-301
18. Gostin LO (1991) Genetic discrimination: the use of genetically based diagnostic and prognostic tests by employers and insurers. Am J Law Med 17:109-144
19. Greely HT (1997) The control of genetic research: involving the "groups between." Houston Law Review 33:1397-1430
20. Grounds RA (1996) The Yuchi community and the Human Genome Diversity Project. Cult Survival 19:64-68
21. Hudson KL, Rothenberg KH, Andrews LB, Kahn MJ, Collins FS (1995) Genetic discrimination and health insurance: an urgent need for reform. Science 270:391-393
22. Indigenous Peoples Coalition Against Biopiracy (1996) Key points for a resolution condemning the Human Genome Diversity Project. Indigenous Peoples Coalition Against Biopiracy, Nixon, NV
23. _ (1998a) Groups as gatekeepers to genomic research: conceptually confusing, morally hazardous, and practically useless. Kennedy Inst Ethics J 8:183-200
24. _ (1998b) Group identity and human diversity: keeping biology straight from culture. Am J Hum Genet 63:673-677
25. Kegley JAK (1996) Using genetic information: the individual and the community. Med Law 15:377-389
26. Khoury MJ (1997) Genetic epidemiology and the future of disease prevention and public health. Epidemiol Rev 19: 175-180
27. King PA (1992) The past as prologue: race, class, and gene discrimination. In: Annas GJ, Elias S (eds) Gene mapping: using law and ethics as guides. Oxford University Press, New York, pp 94-114
28. Long JC, Knowler WC, Hanson RL, Robin RW, Urbanek M, Moore E, Bennett PH, et al (1998) Evidence for genetic linkage to alcohol dependence on chromosomes 4 and 11 from an autosome-wide scan in an American Indian Population. Am J Med Genet 81:216-221
29. Moore JH (1996) Native Americans, scientists and the HGDP. Cult Survival 20:60-62
30. Murphy TF, Lappe MA (eds) (1994) Justice and the Human Genome Project. University of California Press, Berkeley
31. National Congress of American Indians (1998) Resolution condemning the Human Genome Diversity Project (resolution number NV-93-118)
32. NIH Office of Protection from Research Risks (1993) Human genetic research. In: Protecting human research subjects: institutional review board guidebook. US Government Printing Office, Washington, DC
33. Phoenix D, Lybrook S, Trottier R, Hodgin F, Crandall L (1995) Sickle cell screening policies as portent: how will the Human Genome Project affect public sector genetic services? J Natl Med Assoc 87:807-812
34. Proposed model ethical protocol for collecting DNA samples (1997) Houston Law Review 33:1431-1474
35. Reilly PR (1998) Rethinking risks to human subjects in genetic research. Am J Hum Genet 63:682-685
36. Reilly PR, Page DC (1998) We're off to see the genome. Nat Genet 20:15-17
37. Rothman BK (1998) Genetic maps and human imaginations: the limits of science in understanding who we are. W. W. Norton & Co., New York
38. Rothstein MA (ed) (1997) Genetic secrets: protecting privacy and confidentiality in the genetic era. Yale University Press, New Haven, CT
39. _ (1993) The use of genetic information in health and life insurance. In: Friedman T (ed) Molecular genetic medicine. Academic Press, New York
40. Rural Advancement Foundation International (1993) RAFI communique: patents, indigenous peoples, and human genetic diversity. Rural Advancement Foundation International, Ottawa, Ontario
41. Schafer AJ, Hawkins JR (1998) DNA variation and the future of human genetics. Nat Biotech 16:33-39
42. Stolberg SG (1998) Concern among Jews is heightened as scientists deepen gene studies. NY Times April 22, section A
43. Wolf S (1995) Beyond 'genetic discrimination': toward the broader harm of geneticism. J Law Med Ethics 23:345-353