Offering aggregate results to participants in genomic research: opportunities and challenges
Tài liệu tham khảo
Haga
Dressler
Bredenoord
National Heart, Lung, and Blood Institute working group
Organisation for Economic Cooperation and Development, 2010, OECD guidelines on human biobanks and genetic research databases, Eur J Health Law, 17, 191
Eiseman E, Bloom G, Brower J, Clancy N, Olmsted SS. Case Studies of Existing Human Tissue Repositories. “Best Practices” for a Biospecimen Resource for the Genomic and Proteomic Era. RAND Corporation: Santa Monica, CA, 2003.
Beskow
Meulenkamp
US Department of Veterans Affairs. Sharing Aggregate Research Results With Participants. http://www.ethics.va.gov/docs/infocus/InFocus_20090330_Sharing_aggregate_research_results.pdf (2009).
Fernandez
Knoppers
Wolf
Parker
Miller
Goering
King NMP, Henderson GE, Stein J. Beyond Regulations: Ethics in Human Subjects Research, 1st edn. University of North Carolina Press: Chapel Hill, NC, 1999.
Israel
Chen
Beskow
International HapMap Consortium
Marshfield Clinic PMRP Community Advisory Group
Trinidad
McGuire
Caulfield
Greely
Mascalzoni
Elger
O’Doherty
Trinidad
Ludman
Lemke
Contopoulos-Ioannidis
Ioannidis
Holland
Yarborough
Bunin
Dixon-Woods
Beskow
National Bioethics Advisory Commission. Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, vol. 1. US Government Printing Office: Rockville, MD, 1999.
NHLBI Working Group
Beskow
Partridge
Kreuter
Parker, 2006, Rethinking respect for persons enrolled in research, ASBH Exchange, 9, 1,6