Population participation and other factors that impact the compilation and the utility of resulting databases

Louisiana Law Review

Volumn 66, Issue SPEC. ISS., 2005, Pages 79-88

  Greely, T Henry ^a  

^a STANFORD LAW SCHOOL   (United States)

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[No Author keywords available]

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EID: 77949976641     PISSN: 00246859     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (27)

1. Julian Guthrie, A Family's Journey to Madness and Back: Son's Schizophrenia Spurs Parents to Raise Millions for Research, San Fransisco Chronicle, Sept. 7, 2004, at A1, available at 2004 WLNR 7643201;
2. Common Genetic Influence Found in Mental Illnesses-Schizophrenia, Genomics and Genetics Weekly, Feb. 13, 2004, at 69, available at 2004 WLNR 936138;
3. Demosthenes A. Lorandos, Secrecy and Genetics in Adoption Law and Practice, 27 Loy. U. Chi. L. J. 277, 284 (1996);
4. Lori Andrews and Erin Shaughnessy Zuiker, Ethical, Legal, and Social Issues in Genetic Testing for Complex Genetic Diseases, 37 Val. U. L. Rev. 793, 799 (2003).
5. Eric G. Stark, Diabetes Carries a Costly Toll, Sunday News, Lancaster, PA, Aug. 1, 2004, at 1, available at 2004 WLNR 11488523;
6. Andrienne Forman, The Second National Conference on Diabesity in America, Nutrition Today, Nov. 1, 2004, at 245, available at 2004 WLNR 15747171.
7. Chris Winkelman, Genomics: What Every Critical Care Nurse Needs to Know About the Genetic Contribution to Critical Illness, 24 Critical Care Nurse 34, June 1, 2004, available at 2004 WLNR 5689392.
8. Laura McConnell et al., Genetic Testing and Alzheimer Disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society, 3 Genetic Testing 3-12 (May 1999);
9. Laura McConnell, Barbara A. Koenig, Henry T. Greely, & Thomas A. Raffin, Genetic Testing and Alzheimer Disease: Has the Time Come?, 7 Nature Medicine 757-59 (July 1998).
10. Henry T. Greely, Iceland's Plan for Genomic Research: Facts and Implications, 140 Jurimetrics J. 153 (2000).
11. Roger Brownsword, An Interest in Human Dignity as the Basis for Genomics Torts, 42 Washburn L. J. 413 (2003).
12. Alice Hsieh, A Nation's Genes for A Cure to Cancer: Evolving Ethical, Social and Legal Issues Regarding Population Genetic Databases, 37 Colum. J. L. & Soc. Probs, 359, 360 (2004).
13. Id.; J. V. McHale, Regulating Genetic Databases: Some Legal and Ethical Issues, 12 Med. L. Rev. 70 (2004).
14. Meeting of the Human Genome Organization Ethical, Legal, and Social Issues Committee (since renamed the HUGO Ethics Committee) at Bethesda, Maryland, Oct. 14-15, 1995. I was not a member of that Committee but was asked, along with Professor Kidd, to give a presentation to them on the Human Genome Diversity Project. We stayed for the discussion of their proposed statement on the ethics of genetics research, which became the Committee's report to the HUGO Council entitled "Statement on Principled Conduct of Genetics Research." That report can be found at http://www.gene. ucl.ac.uk/hugo/conduct.htm. It was adopted by the HUGO Council on March 21, 1996, http://www.csu.edu.au/learning/eubios/HUGO.html.
15. Statement On The Principled Conduct Of Genetics Research, http://www.csu.edu.au/learning/eubios/HUGO.html
16. Id.
17. Greely, supra, note 5;
18. Michael J. Smith, Population-Based Genetic Studies: Informed Consent and Confidentiality, 18 Santa Clara Computer & High Tech L. J. 57, 68 (2001).
19. Greely, supra note 5.
20. See generally James H. Jones, Bad Blood; The Tuskagee Syphilis Experiment (2d ed. Free Press 1993).
21. Dorothy E. Roberts, The Nature of Blacks' Skepticism About Genetic Testing: Purpose, Voice, and Values Essay, 27 Seton Hall L. Rev. 971 (1997).
22. That African-Americans are less willing to participate in biomedical research is widely believed and the reason has often been traced to distrust See, e.g., Giselle Corbie-Smith, Stephen B. Thomas, Mark V. Williams, Sandra Moody-Ayers, Attitudes and Beliefs of African-Americans Toward Participation in Medical Research, 14 J. Gen. Int. Med. 537 (1999).
23. But see David Wendler, et. al., Are Ethnic Minorities Less Willing to Participate in Health Research?, 3-PLOS-Medicine, No. 2, el9 (Feb. 2006), available at http://medicine.plosjournaIs.org/perlserv/?request= getdocument&doi=10.1371/journal.pmed.0030019 (arguing that the reason for lower African-American participation in medical research is insufficient outreach to African-American populations).
24. This excellent repartee is apparently apocryphal. See the discussion by Professor James West, a Fitzgerald scholar, in an on-line discussion of Fitzgerald, http://www.washingtonpost.com/wp-dyn/content/discussion/2005/08/26/ DI2005082601396.html. Hemingway did include a version of the exchange, between Fitzgerald and an unnamed third party, in his short story, The Snows of Kilamanjaro, where the autobiographical narrator says: The rich were dull and they drank too much or they played too much backgammon. They were dull and they were repetitious. He remembered poor Scott Fitzgerald and his romantic awe of them and how he had started a story once that began, "The rich are different from you and me." And how someone had said to Scott, "Yes, they have more money." See the discussion of this incident in John Updike, Poor Little Rich Boy, The Guardian, June 21, 2003.
25. They Need Your DNA, New Scientist, Sept. 30, 2000, available at 2000 WLNR 17410;
26. Kurt Kleiner, Blood Fued, New Scientist, Sept. 30, 2000, available at 2000 WLNR 17453.
27. Ann Gibbons, The Peopling of the Americas, Science, Oct. 4, 1996, 1996 WLNR 3527432.