Charting ELSI's future course: Lessons from the recent past

Genetics in Medicine

Volumn 14, Issue 2, 2012, Pages 259-267

  Walker, Rebecca L ^a   Morrissey, Clair ^b  

^a UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^b OCCIDENTAL COLLEGE   (United States)

Author keywords

ELSI research; ethics genetics; human genomics; NHGRI

Indexed keywords

ARTICLE; CONTROLLED STUDY; DOWNSTREAM PROCESSING; GENOMICS; HUMAN; LEGAL PROCEDURE; MEDICAL EDUCATION; PUBLICATION; RESEARCH ETHICS; SOCIAL ASPECT; TRAINING;

BIOMEDICAL RESEARCH; DATABASES, GENETIC; ETHICS, RESEARCH; FELLOWSHIPS AND SCHOLARSHIPS; GENETICS, MEDICAL; GENOMICS; HUMANS; PUBLICATIONS; PUBLISHING;

EID: 84856718730     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.2011.60     Document Type: Article

References (37)

1. Green ED, Guyer MS; National Human Genome Research Institute. Charting a course for genomic medicine from base pairs to bedside. Nature 2011;470:204-213.
2. Wheeler AC, Skinner DG, Bailey DB. Perceived quality of life in mothers of children with fragile X syndrome. Am J Ment Retard 2008;113:159-177.
3. Geller G, Tambor ES, Bernhardt BA, Fraser G, Wissow LS. Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children's and parents' views about children's role in decision-making. J Adolesc Health 2003;32:260-271. (Pubitemid 36349488)
4. Cho MK, Sankar P. Forensic genetics and ethical, legal and social implications beyond the clinic. Nat Genet 2004;36(11 Suppl):S8-12. (Pubitemid 41103831)
5. Ekberg M. Maximizing the benefits and minimizing the risks associated with prenatal genetic testing. Health, Risk and Society 2007;9:67-81. (Pubitemid 46371949)
6. Phua K.-L. The Human Genome Project and genetic research: what are the implications for ethics and equity? Critical Public Health 2004;14: 191-200. (Pubitemid 39232660)
7. Tong R. Traditional and feminist bioethical perspectives on gene transfer: is inheritable genetic modification really the problem? In: Rasko J, O'Sullivan G, Ankeny R (eds). The Ethics of Inheritable Genetic Modification: A Dividing Line? Cambridge University Press: Cambridge, 2006:159-171.
8. Ling T, Raven A. Pharmacogenetics and uncertainty: implications for policy makers. Stud Hist Philos Biol Biomed Sci 2006;37:533-549. (Pubitemid 44356444)
9. Baylis F. Blacks as me: narrative identity. Dev World Bioeth 2003;3:142-150.
10. HUGO Ethics Committee. HUGO statement on pharmacogenomics (PGx): solidarity, equity and governance. Genomics, Society and Policy 2007;3: 44-47.
11. Botkin JR, Clayton EW, Fost NC, et al. Newborn screening technology: proceed with caution. Pediatrics 2006;117:1793-1799. (Pubitemid 46071411)
12. Collins FS, Green ED, Guttmacher AE, Guyer MS; US National Human Genome Research Institute. A vision for the future of genomics research. Nature 2003;422:835-847. (Pubitemid 36520032)
13. Sharp RR, Yudell MA, Wilson SH. Shaping science policy in the age of genomics. Nat Rev Genet 2004;5:311-316. (Pubitemid 38435627)
14. Juengst ET. The Human Genome Project and bioethics. Kennedy Inst Ethics J 1991;1:71-74.
15. Wasserman DT. My fair baby: what's wrong with parents genetically enhancing their children? In: Gehring VV (ed). Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy. Rowman and Littlefield: Lanham, 2003:99.
16. Suter SM. Disentangling privacy from property: toward a deeper understanding of genetic privacy. George Washington Law Rev 2004;72:737-814. (Pubitemid 38727223)
17. Halpern SD. Towards evidence based bioethics. BMJ 2005;331:901-903. (Pubitemid 41502719)
18. Hedgecoe AM. Critical bioethics: beyond the social science critique of applied ethics. Bioethics 2004;18:120-143. (Pubitemid 38405214)
19. Hoffmaster B. Can ethnography save the life of medical ethics? Soc Sci Med 1992;35:1421-1431.
20. DeVries R, Conrad P. Why bioethics needs sociology. In: DeVries R, Subedi J (eds). Bioethics and Society: Constructing the Ethical Enterprise. Prentice Hall: Englewood Cliffs, 1998:233-257.
21. Rosenberg CE. Meanings, policies, and medicine: on the bioethical enterprise and history. Daedalus 1999;128:27-46.
22. Jacoby L, Siminoff LA. Introduction. In: Jacoby L, Siminoff LA (eds). Empirical Methods for Bioethics: A Primer. JAI Press: San Diego, 2008:1-10.
23. Jacoby L, Siminoff LA eds. Empirical Methods for Bioethics: A Primer. JAI Press: San Diego, 2008.
24. Sugarman J, Faden R, Weinstein J. A decade of empirical research in medical ethics. In: Sugarman J, Sulmasy DP (eds). Methods in Medical Ethics, 2nd edn. Georgetown University Press: Washington, D.C., 2010:21-34.
25. Sulmasy DP, Sugarman J. The many methods of medical ethics. In: Sugarman J, Sulmasy DP (eds). Methods in Medical Ethics, 2nd edn. Georgetown University Press: Washington, D.C., 2010:3-19.
26. Borry P, Schotsmans P, Dierickx K. Empirical research in bioethical journals. A quantitative analysis. J Med Ethics 2006;32:240-245.
27. Nelson JL. Moral teachings from unexpected quarters. Lessons for bioethics from the social sciences and managed care. Hastings Cent Rep 2000;30: 12-17.
28. Hoffmaster B, Hooker C. How experience confronts ethics. Bioethics 2009;23:214-225.
29. Haimes E. What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations. Bioethics 2002;16: 89-113. (Pubitemid 34285665)
30. O'Neill O. Some limits of informed consent. J Med Ethics 2003;29:4-7. (Pubitemid 36231456)
31. Farrelly C. Genes and equality. J Med Ethics 2004;30:587-592. (Pubitemid 40029067)
32. Brewer RM. Thinking critically about race and genetics. J Law Med Ethics 2006;34:513-9, 480. (Pubitemid 44508562)
33. Sheldon JP, Epstein Jayaratne T, Feldbaum MB, DiNardo CD, Petty EM. Applications and implications of advances in human genetics: perspectives from a group of Black Americans. Community Genet 2007;10:82-92. (Pubitemid 46474696)
34. Mc Fleming J. The governance of human genetic research databases in mental health research. Int J Law Psychiatry 2007;30:182-190.
35. Farrelly C. Justice in the genetically transformed society. Kennedy Inst Ethics J 2005;15:91-99. (Pubitemid 40592295)
36. Muers R. Reading texts between generations: a proposal concerning theological engagement with genetic research. Scottish Journal of Theology 2004;57:466-478.
37. Resnik DB. Are DNA patents bad for medicine? Health Policy 2003;65: 181-197. (Pubitemid 36802222)