DNA data sharing: Research participants' perspectives

Genetics in Medicine

Volumn 10, Issue 1, 2008, Pages 46-53

  McGuire, Amy L ^a   Hamilton, Jennifer A ^b   Lunstroth, Rebecca ^c   McCullough, Laurence B ^a   Goldman, Alica ^a  

^a BAYLOR COLLEGE OF MEDICINE   (United States)

^b HAMPSHIRE COLLEGE   (United States)

^c UNIVERSITY OF TEXAS   (United States)

Author keywords

Data release; Ethics; Focus group; Privacy; Sequencing

Indexed keywords

DNA;

ADULT; AGED; ARTICLE; ATTITUDE; CONTROLLED STUDY; DECISION MAKING; DNA DETERMINATION; EPILEPSY; ETHICS; FEMALE; GENETIC DATABASE; GENETIC VARIABILITY; GENETICS; HUMAN; INFORMATION DISSEMINATION; INFORMATION PROCESSING; INFORMED CONSENT; MALE; MEDICAL INFORMATICS;

ADOLESCENT; ADULT; AGED; CONFIDENTIALITY; COOPERATIVE BEHAVIOR; DNA; EPILEPSY; FEMALE; GENETIC RESEARCH; HUMANS; INFORMED CONSENT; MALE; MIDDLE AGED; RESEARCH PERSONNEL; RESEARCH SUBJECTS;

EID: 38149081397     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e31815f1e00     Document Type: Article

References (25)

1. National Human Genome Research Institute. NIH-DOE guidelines for access to mapping and sequencing data and material resources, 1991. Available at: http://www.genome.gov/10000925. Accessed December 3, 2007.
2. The Wellcome Trust. Summary of principles agreed at the international strategy meeting on human genome sequencing, Bermuda, February 25th-28th, 1996. Available at: http://www.ornl.gov/sci/techresources/Human_Genome/research/ bermuda.shtml. Accessed December 3, 2007.
3. National Human Genome Research Institute. NHGRI policy on release of human genomic sequence data, March 1997, Updated December 2000. Available at: http://www.genome.gov/10000910. Accessed December 3, 2007.
4. The Wellcome Trust. Sharing data from large-scale biological research projects: a system of tripartite responsibility, Fort Lauderdale, January 14th-15th, 2003. Available at: http://www.wellcome.ac.uk/assets/wtd003207.pdf. Accessed December 3, 2007.
5. National Human Genome Research Institute. Reaffirmation and extension of NHGRI rapid data release policies: large-scale sequencing and other community resource projects. February 2003. Available at: http://www.genome.gov/10506537. Accessed December 3, 2007.
6. Genome Canada. Data release & resource sharing policy. July 1, 2005. Available at: http://www.genomecanada.ca/xcorporate/policies/DataReleasePolicy. pdf. Accessed December 3, 2007.
7. National Human Genome Research Institute. Human genome project completion: frequently asked questions. Available at: http://www.genome.gov/ 11006943. Accessed December 3, 2007.
8. National Human Genome Research Institute. NHGRI-DOE guidance on human subjects issues in large-scale DNA sequencing. August 17, 1996, Updated April 27, 1998. Available at: http://www.genome.gov/pfv.cfm?pageid=10000921. Accessed December 3, 2007.
9. Office for Human Research Protections. Guidance on research involving coded private information or biological specimens. August 10, 2004. Available at: http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf. Accessed December 3, 2007.
10. Department of Health and Human Services. Research repositories, databases, and the HIPAA privacy rule. January 2004. Available at: http://privacyruleandresearch.nih.gov/pdf/research_repositories_final.pdf. Accessed December 3, 2007.
11. Lin Z, Owen AB, Altman RB. Genomic research and human subject privacy. Science 2004;305:183.
12. McGuire AL, Gibbs RA. No longer de-identified. Science 2006;312:370-371.
13. McGuire AL, Gibbs RA. Currents in contemporary ethics: meeting the growing demands of genetic research. J Law Med Ethics 2006;34:809-812.
14. Summary of the NHGRI workshop on privacy, confidentiality and identifiability in genomic research, Bethesda, MD, October 3-4, 2006. Available at: http://www.genome.gov/19519198. Accessed December 3, 2007.
15. Lowrance WW, Collins FS. Identifiability in genomic research. Science 2007;317:600-602.
16. The International HapMap Consortium. Template consent form. Available at: http://www.hapmap.org/downloads/elsi/consent/Consent_Form_Template.pdf. Accessed December 3, 2007.
17. Strauss AL, Corbin J. Basics of qualitative research: techniques and procedures for developing grounded theory, 2nd ed. Thousand Oaks, CA: Sage, 1998.
18. Denzin NK, Lincoln YS. Handbook of qualitative research, 2nd ed. Thousand Oaks, CA: Sage, 2000.
19. Policy for sharing of data obtained in NIH supported or conducted genome-wide association studies (GWAS). Federal Register 2007;72:49290-49297. Available at: http://www.grant.nih.gov/grants/guide/notice- files/NOT-OD-07- 088.html. Accessed December 3, 2007.
20. The GAIN Collaborative Research Group. New models of collaboration in genome-wide association studies: the Genetic Association Information Network. Nat Genet 2007;39:1045-1051.
21. Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Arch Intern Med 1996;156:1414-1420.
22. Flynn KE, Smith MA, Vanness D. A typology of preferences for participation in healthcare decision making. Soc Sci Med 2006;63:1158-1169.
23. Sterling R, Henderson GE, Corbie-Smith G. Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am J Public Health 2006;96:1971-1978.
24. Genetics and Public Policy Center. U.S. public opinion on uses of genetic information and genetic discrimination. April 24, 2007. Available at: http://www.DNApolicy.org/resources/ GINAPublic_Opinion_Genetic_Information_Discrimination.pdf. Accessed December 3, 2007.
25. Exception from informed consent requirements for emergency research. 21 CFR 50.24. 2006. Available at: http://www.fda.gov/ora/compliance_ref/bimo/ default.htm#emer. Accessed December 3, 2007.