Ethical implications of the use of whole genome methods in medical research

European Journal of Human Genetics

Volumn 18, Issue 4, 2010, Pages 398-403

  Kaye, Jane ^a   Boddington, Paula ^a   De Vries, Jantina ^a   Hawkins, Naomi ^a   Melham, Karen ^a  

^a UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

DNA;

DNA DETERMINATION; GENETIC ASSOCIATION; GENETIC VARIABILITY; GENOME ANALYSIS; GENOTYPE ENVIRONMENT INTERACTION; GENOTYPE PHENOTYPE CORRELATION; HEALTH CARE POLICY; HUMAN; HUMAN GENOME; INFORMED CONSENT; MEDICAL ETHICS; MEDICAL RESEARCH; PATIENT PARTICIPATION; PRIORITY JOURNAL; PROFESSIONAL SECRECY; RESEARCH ETHICS; REVIEW;

BIOMEDICAL RESEARCH; ETHICS, MEDICAL; GENETIC PRIVACY; GENOME, HUMAN; GENOME-WIDE ASSOCIATION STUDY; HUMANS;

EID: 77949653046     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2009.191     Document Type: Review

References (27)

1. Ioannidis JP: Personalized genetic prediction: too limited too expensive or too soon? Ann Intern Med 2009; 150: 139-141.
2. McCarthy MI, Abecasis GR, Cardon LR et al: Genome-wide association studies for complex traits: consensus, uncertainties, and challenge. Nat Rev Genet 2008; 9: 356-359.
3. von Bubnoff A: Next-generation sequencing: the race is on. Cell 2008; 132: 721-723.
4. Schuster SC: Next-generation sequencing transforms today's biology. Nat Meth 2008; 5: 16-18.
5. Lowrance WW, Collins FS: Identifiability in genomic research. Science 2007; 317: 600-602.
6. McGuire AL, Caulfield T, Cho MK: Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet 2008; 9: 152-156.
7. Caulfield T, McGuire AL, Cho MK et al: Research ethics recommendations for whole-genome research: consensus statement. Plos Biol 2008; 6: e73.
8. Lunshof JE, Chadwick R, Vorhaus DB, Church GM: From genetic privacy to open consent. Nat Rev Genet 2008; 9: 406-411.
9. Kaye J, Heeney C, Hawkins N, de Vries J, Boddington P: Data sharing in genomics: re-shaping scientific practice. Nat Rev Genet 2009; 10: 331-335.
10. Toronto International Data Release Workshop Authorse, Prepublication data sharing, Nature 2009; 461: 168-170.
11. Knoppers BM, Joly Y, Simard J, Durocher F: The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet 2006; 14: 1170-1178.
12. Wolf SM, Lawrenz FP, Nelson CA et al: Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics 2008; 36: 219-248.
13. Clayton EW: Incidental findings in genetics research using archived DNA. J Law Med Ethics 2008; 36: 286-291.
14. Illes J, Chin VN: Bridging philosophical and practical implications of incidental findings in brain research. J Law Med Ethics 2008; 36: 298-304.
15. Cho MK: Understanding Incidental findings in the context of genetics and genomics. J Law Med Ethics 2008; 36: 280-285.
16. Van Ness B: Genomic research and incidental findings. J Law Med Ethics 2008; 36: 292-297, 212.
17. Kohane IS, Altman RB: Health-information altruists-a potentially critical resource. N Engl J Med 2005; 353: 2074-2077.
18. Beyleveld D: Data protection and genetics: medical research and the public good. King's Law J 2007; 18: 275-289.
19. Hull SC, Sharp RR, Botkin JR et al: Patients' views on identifiability of samples and informed consent for genetic research. Am J Bioeth 2008; 8: 62-70.
20. Caulfield T, Kaye J: Broad consent in biobanking: reflections on seemingly insurmountable dilemmas. Med Law Inter 2009; 10: 85-100.
21. McGuire AL, Gibbs RA: Genetics. No longer de-identified. Science 2006; 312: 370-371.
22. Homer N, Szelinger S, Redman M et al: Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet 2008; 4: e1000167.
23. Gitschier J: Inferential genotyping of Y chromosomes in Latter-Day Saints founders and comparison to Utah samples in the HapMap project. Am J Hum Genet 2009; 84: 251-258.
24. Nyholt DR, Yu CE, Visscher PM: On Jim Watson's APOE status: genetic information is hard to hide. Eur J Hum Genet 2009; 17: 147-149.
25. Mascalzoni D, Hicks A, Pramstaller P, Wjst M: Informed consent in the genomics era. PLoS Med 2008; 5: e192.
26. Muula AS, Mfutso-Bengo JM: Responsibilities and obligations of using human research specimens transported across national boundaries. J Med Ethics 2007; 33: 35-38.
27. Hoedemaekers R, Gordijn B, Hekster Y, Van Agt F: The complexities of ethical evaluation of genomics research. HEC Forum 2006; 18: 18-36.