Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

References

• Report of a meeting organized by the Wellcome Trust. Sharing data from large-scale biological research projects: a system of tripartite responsibility. 14–15 January 2003; Fort Lauderdale, USA
   Google Scholar
• International Strategy Meeting on Human Genome Sequencing. Bermuda principles. 25–28 February 1996; Bermuda
   Google Scholar
• The International HapMap Project. Available from: www.hapmap.org [Last accessed 16 September 2014]
   Google Scholar
• Church DM, Lappalainen I, Sneddon TP, et al. Public data archives for genomic structural variation. Nat Genet 2010;42(10):813-14
   PubMed Web of Science ®Google Scholar
• Mailman MD, Feolo M, Jin Y, et al. The NCBI dbGaP database of genotypes and phenotypes. Nat Genet 2007;39(10):1181-6
   PubMed Web of Science ®Google Scholar
• The database of Genotypes and Phenotypes (dbGaP). Available from: www.ncbi.nlm.nih.gov/gap [Last accessed 16 September 2014]
   Google Scholar
• European Genome-phenome Archive (EGA). Available from: www.ebi.ac.uk/ega/home [Last accessed 16 September 2014]
   Google Scholar
• MalariaGEN. Available from: www.malariagen.net/ [Last accessed 16 September 2014]
   Google Scholar
• Wellcome Trust Case Control Consortium (WTCCC). Available from: www.wtccc.org.uk/ [Last accessed 16 September 2014]
   Google Scholar
• International Cancer Genome Consortium (ICGC). Available from: https://icgc.org/ [Last accessed 16 September 2014]
   Google Scholar
• Joly Y, Dove ES, Knoppers BM, et al. Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). Plos Comput Biol 2012;8(7):e1002549
   PubMed Web of Science ®Google Scholar
• Manolio TA, Rodriguez LL, Brooks L, et al. New models of collaboration in genome-wide association studies: the Genetic Association Information Network. Nat Genet 2007;39(9):1045-51
   Google Scholar
• Parker M, Bull SJ, de Vries J, et al. Ethical data release in genome-wide association studies in developing countries. Plos Med 2009;6(11):e1000143
   PubMed Web of Science ®Google Scholar
• Caulfield T. Biobanks and blanket consent: the proper place of the public good and public perception rationales. King’s Law J 2007;18(2):209-26
   Google Scholar
• Gibbons S, Kaye J, Smart A, et al. Governing genetic databases: challenges facing research regulation and practice. J Law Soc 2007;34(2):163-89
   Web of Science ®Google Scholar
• Hayden EC. Informed consent: a broken contract. Nature 2012;486(7403):312-14
   PubMedGoogle Scholar
• Kaye J, Heeney C, Hawkins N, et al. Data sharing in genomics-re-shaping scientific practice. Nat Rev Genet 2009;10(5):331-5
   PubMed Web of Science ®Google Scholar
• Lunshof JE, Chadwick R, Vorhaus DB, Church GM. From genetic privacy to open consent. Nat Rev Genet 2008;9(5):406-11
   PubMed Web of Science ®Google Scholar
• Tassé AM, Budin-Ljøsne I, Knoppers BM, Harris JR. Retrospective access to data: the ENGAGE consent experience. Eur J Hum Genet 2010;18(7):741-5
   Google Scholar
• Kaye J. The tension between data sharing and the protection of privacy in genomics research. Ann Rev Genomics Hum Genet 2012;13:415-31
   Google Scholar
• Lowrance WW, Collins FS. Ethics. Identifiability in genomic research. Science 2007;317(5838):600-2
   PubMed Web of Science ®Google Scholar
• Gymrek M, McGuire AL, Golan D, et al. Identifying personal genomes by surname inference. Science 2013;339(6117):321-4
   PubMed Web of Science ®Google Scholar
• 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(8):e1000167
   PubMed Web of Science ®Google Scholar
• Church G, Heeney C, Hawkins N, et al. Public access to genome-wide data: five views on balancing research with privacy and protection. PLoS Genet 2009;5(10):e1000665
   Google Scholar
• Dyke SO, Hubbard TJ. Developing and implementing an institute-wide data sharing policy. Genome Med 2011;3(9):60
   Google Scholar
• OECD. Principles and guidelines for access to research data from public funding. 2007
   Google Scholar
• Kaye J, Hawkins N. Data sharing policy design for consortia: challenges for sustainability. Genome Med 2014;6(1):4
   PubMedGoogle Scholar
• NIH. Request for Information (RFI): proposed policy for sharing of data obtained in NIH supported or conducted Genome-Wide Association Studies (GWAS). 2006
   Google Scholar
• NIH. Policy for sharing of data obtained in NIH supported or conducted Genome-Wide Association Studies (GWAS). 2007
   Google Scholar
• NIH. Genomic data sharing policy. 2014
   Google Scholar
• Peppercorn J, Shapira I, Deshields T, et al. Ethical aspects of participation in the Database of Genotypes and Phenotypes of the National Center for Biotechnology Information. Cancer 2012;118(20):5060-8
   Google Scholar
• Dove ES, Joly Y, Knoppers BM, et al. Power to the people: a wiki-governance model for biobanks. Genome Biol 2012;13(5):158
   Web of Science ®Google Scholar
• Rotimi C, Leppert M, Matsuda I, et al. Community engagement and informed consent in the International HapMap project. Public Health Genomics 2007;10(3):186-98
   Google Scholar
• Garland MJ. Experts and the public: a needed partnership for genetic policy. Public Underst Sci 1999;8(3):241-54
   Google Scholar
• Gollust SE, Apse K, Fuller BP, et al. Community involvement in developing policies for genetic testing: assessing the interests and experiences of individuals affected by genetic conditions. Am J Public Health 2005;95(1):35-41
   PubMed Web of Science ®Google Scholar
• Jamal L, Sapp JC, Lewis K, et al. Research participants’ attitudes towards the confidentiality of genomic sequence information. Eur J Hum Genet 2013;276:1-5
   Google Scholar
• Haga SB, O’Daniel J. Public perspectives regarding data-sharing practices in genomics research. Public Health Genomics 2011;14(6):319-24
   Google Scholar
• McGuire AL, Oliver JM, Slashinski MJ, et al. To share or not to share: a randomized trial of consent for data sharing in genome research. Genet Med 2011;13(11):948-55
   PubMed Web of Science ®Google Scholar
• Trinidad SB, Fullerton SM, Bares JM, et al. Genomic research and wide data sharing: views of prospective participants. Genet Med 2010;12(8):486-95
   PubMed Web of Science ®Google Scholar
• Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 2010;13(6):368-77
   PubMed Web of Science ®Google Scholar
• McGuire AL, Hamilton JA, Lunstroth R, et al. DNA data sharing: research participants’ perspectives. Genet Med 2008;10(1):46-53
   PubMed Web of Science ®Google Scholar
• Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL. Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009;85(5):643-54
   PubMed Web of Science ®Google Scholar
• Trinidad SB, Fullerton SM, Bares JM, et al. Informed consent in genome-scale research: what do prospective participants think? AJOB Prim Res 2012;3(3):3-11
   PubMedGoogle Scholar
• Kaufman D, Murphy J, Erby L, et al. Veterans’ attitudes regarding a database for genomic research. Genet Med 2009;11(5):329-37
   Google Scholar
• Goddard KA, Smith KS, Chen C, et al. Biobank recruitment: motivations for nonparticipation. Biopreserv Biobank 2009;7(2):119-21
   PubMed Web of Science ®Google Scholar
• Oliver JM, Slashinski MJ, Wang T, et al. Balancing the risks and benefits of genomic data sharing: genome research participants perspectives. Public Health Genomics 2011;15(2):106-14
   Google Scholar
• McCarty CA, Garber A, Reeser JC, Fost NC. Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank. Am J Med Genet A 2011;155(4):737-41
   Google Scholar
• Ludman EJ, Fullerton SM, Spangler L, et al. Glad you asked: participants’ opinions of re-consent for dbGap data submission. J Empir Res Hum Res 2010;5(3):9-16
   PubMed Web of Science ®Google Scholar
• Rahm AK, Wrenn M, Carroll NM, Feigelson HS. Biobanking for research: a survey of patient population attitudes and understanding. J Commun Genetics 2013;4(4):445-50
   PubMedGoogle Scholar
• Robinson JO, Slashinski MJ, Wang T, et al. Participants recall and understanding of genomic research and large-scale data sharing. J Empir Res Hum Res 2013;8(4):42-52
   Google Scholar
• Foster MW, Sharp RR. Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nat Rev Genet 2007;8(8):633-9
   Google Scholar
• Johnsson L, Helgesson G, Rafnar T, et al. Hypothetical and factual willingness to participate in biobank research. Eur J Hum Genet 2010;18(11):1261-4
   PubMed Web of Science ®Google Scholar
• Snell K, Starkbaum J, Lauß G, et al. From protection of privacy to control of data streams: a focus group study on biobanks in the information society. Public Health Genomics 2012;15(5):293-302
   Web of Science ®Google Scholar
• Hobbs A, Starkbaum J, Gottweis U, et al. The privacy-reciprocity connection in biobanking: comparing German with UK strategies. Public Health Genomics 2012;15(5):272-84
   PubMed Web of Science ®Google Scholar
• Ursin LØ, Steinsbekk KS. Peeking into the black box of privacy-biobank participants on the importance of recognition. Norsk epidemiologi 2012;21(2):269-76
   Google Scholar
• Gaskell G, Gottweis H, Starkbaum J, et al. Publics and biobanks: pan-European diversity and the challenge of responsible innovation. Eur J Hum Genet 2013;21(1):14-20
   PubMed Web of Science ®Google Scholar
• Godard B, Marshall J, Laberge C. Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project. Public Health Genomics 2007;10(3):147-58
   Google Scholar
• Ridgeway JL, Han LC, Olson JE, et al. Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank? Public Health Genomics 2013;16(3):118-26
   Google Scholar
• Mello MM, Wolf LE. The Havasupai Indian tribe case-lessons for research involving stored biologic samples. N Engl J Med 2010;363(3):204-7
   PubMed Web of Science ®Google Scholar
• Greely HT. Banning genetic discrimination. N Engl J Med 2005;353(9):865-7
   Google Scholar
• Caulfield T, Chandrasekharan S, Joly Y, Cook-Deegan R. Harm, hype and evidence: ELSI research and policy guidance. Genome Med 2013;5(3):21
   PubMedGoogle Scholar
• Joly Y, Feze IN, Simard J. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med 2013;11(1):25
   PubMedGoogle Scholar
• Hoeyer K. Trading in cold blood? In: Dabrock P, Taupitz J, Ried J, editors. Trust in biobanking: dealing with ethical, legal and social issues in an emerging field. Volume 33. Springer Berlin Heidelberg; Berlin, Germany: 2012. p. 21-41
   Google Scholar
• Steinsbekk KS, Ursin Lo, Skolbekken JA, Solberg B. We’re not in it for the money lay peoples moral intuitions on commercial use of their biobank. Med Health Care Philos 2013;16(2):151-62
   PubMed Web of Science ®Google Scholar
• Caulfield T, Burningham S, Joly Y, et al. A review of the key issues associated with the commercialization of biobanks. J Law Biosci 2014;1(1):94-110
   PubMed Web of Science ®Google Scholar
• Beskow LM, Friedman JL, Hardy NC, et al. Simplifying informed consent for biorepositories: stakeholder perspectives. Genet Med 2010;12(9):567-72
   PubMed Web of Science ®Google Scholar
• Steinsbekk KS, Myskja BrK, Solberg B. Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem. Eur J Hum Genet 2013;21(9):897-902
   PubMed Web of Science ®Google Scholar
• Kaye J. From single biobanks to international networks: developing e-governance. Hum Genet 2011;130(3):377-82
   PubMed Web of Science ®Google Scholar
• Stranger M, Chalmers D, Nicol D. Capital, trust & consultation: Databanks and regulation in Australia. Crit Public Health 2005;15(4):349-58
   Google Scholar
• Fan CT, Wu C, Shi Z. Impact of development of population-based study in biomedical field on laws and regulations: a cross-strait experience on biobank development. J Int Bioethique 2008;19(4):117-37
   Google Scholar
• Melas PA, Sjoholm LK, Forsner T, et al. Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study. J Med Ethics 2010;36(2):93-8
   Google Scholar
• Kettis-Lindblad A, Ring L, Viberth E, Hansson MG. Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Eur J Public Health 2006;16(4):433-40
   PubMed Web of Science ®Google Scholar
• Yarborough M, Fryer-Edwards K, Geller G, Sharp RR. Transforming the culture of biomedical research from compliance to trustworthiness: insights from nonmedical sectors. Acad Med 2009;84(4):472-7
   Google Scholar
• Nuffield Council on Bioethics. The linking and use of biological and health data. 2013
   Google Scholar
• Presidential Commission for the study of bioethical issues. Privacy and progress in whole genome sequencing. 2012
   Google Scholar
• Mathews DJ, Jamal L. Revisiting respect for persons in genomic research. Genes 2014;5(1):1-12
   Google Scholar