Public preferences regarding informed consent models for participation in population-based genomic research

Genetics in Medicine

Volumn 16, Issue 1, 2014, Pages 11-18

  Platt, Jodyn ^a   Bollinger, Juli ^b   Dvoskin, Rachel ^b   Kardia, Sharon L R ^a   Kaufman, David ^b  

^a UNIVERSITY OF MICHIGAN   (United States)

^b JOHNS HOPKINS UNIVERSITY   (United States)

Author keywords

biobank; broad consent; informed consent; large population studies; public engagement

Indexed keywords

ADULT; ARTICLE; BROAD CONSENT; COHORT ANALYSIS; CONTROLLED STUDY; EDUCATION; FEAR; FEMALE; HEALTH SURVEY; HUMAN; INCOME; INFORMED CONSENT; MALE; MEDICAL GENETICS; NORMAL HUMAN; PERSONAL VALUE; POPULATION RESEARCH; PRIVACY; SCIENTIST; SOCIAL ATTITUDE; SOCIAL BELIEF; SOCIAL PARTICIPATION; STUDY BY STUDY CONSENT; TRUST; UNITED STATES; YOUNG ADULT;

ADULT; BIOLOGICAL SPECIMEN BANKS; COHORT STUDIES; DATA COLLECTION; DEMOGRAPHY; GENETIC RESEARCH; GENOMICS; HUMANS; INFORMED CONSENT; INTERNET; PUBLIC OPINION; UNITED STATES;

EID: 84893609873     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.2013.59     Document Type: Article

References (25)

1. Collins FS, Manolio TA. Merging and emerging cohorts: necessary but not sufficient. Nature 2007;445(7125):259.
2. Veterans Health Administration. Million Veteran Program (MVP). Million Veteran Program (MVP). http://www.research.va.gov/mvp/. Accessed 16 August 2012.
3. Kaiser Permanente. The Research Program on Genes, Environment, and Health. http://www.dor.kaiser.org/external/DORExternal/rpgeh/index.aspx. Accessed 16 August 2012.
4. UK Biobank. Web Page. http://www.ukbiobank.ac.uk/. Accessed 16 August 2012.
5. Altshuler D, Daly MJ, Lander ES. Genetic mapping in human disease. Science 2008;322:881-888.
6. Yuille M, van Ommen GJ, Bréchot C, et al. Biobanking for Europe. Brief Bioinformatics 2008;9:14-24.
7. Splansky GL, Corey D, Yang Q, et al. The Third Generation Cohort of the National Heart, Lung, and Blood Institute's Framingham Heart Study: design, recruitment, and initial examination. Am J Epidemiol 2007;165:1328-1335.
8. Knoppers BM, Avard D, Cardinal G, Glass KC. Children and incompetent adults in genetic research: consent and safeguards. Nat Rev Genet 2002;3(3):221-225.
9. Caulfield T, McGuire AL, Cho M, et al. Research ethics recommendations for whole-genome research: consensus statement. PLoS biology 2008;6(3):e73.
10. Fullerton SM, Anderson NR, Guzauskas G, Freeman D, Fryer-Edwards K. Meeting the governance challenges of next-generation biorepository research. Sci Transl Med 2010;2:15cm3.
11. Solbakk JH, Holm S, Hofmann B. The Ethics of Research Biobanking. Springer: Dordrecht; New York, 2009:358. http://public.eblib.com/EBLPublic/ PublicView. do?ptiID=478061.
12. Rothwell E, Anderson R, Goldenberg A, et al. Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study. Soc Sci Med 2012;74(8):1305-1309. http://www.sciencedirect.com/ science/article/pii/S0277953612001050.
13. Kaufman D, Murphy J, Scott J, Hudson K. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med 2008;10:831-839.
14. Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public perspectives on informed consent for biobanking. Am J Public Health 2009;99:2128-2134.
15. Genetics and Public Policy Center. GPPC Proposed study video. http://www. youtube.com/watch?v=m-x81nkCP8A. Accessed 13 March 2013.
16. Knowledge Networks. Validity of the survey of health and internet and Knowledge Network's panel and sampling, 2003. http://www.cdc.gov/PCD/issues/ 2004/oct/pdf/04-0004-01.pdf.
17. Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL. Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009;85:643-654.
18. Anderson S, Newell RG. Simplified marginal effects in discrete choice models. Economics Letters 2003;81(3):321-326.
19. Cameron AC, Trivedi PK. Microeconometrics Using Stata. 2, Revised, Illustrated. Stata Press: College Station, TX, 2010:706.
20. Hoeyer K. Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity? Public Health Genomics 2010;13:345-352.
21. Giddens A. The Consequences of Modernity. Stanford University Press: Stanford, CA, 1991:188.
22. Giddens A. Beyond Left and Right: The Future of Radical Politics. Stanford University Press: Stanford, CA, 1994.
23. Platt J, Platt T, Thiel D, Kardia S. 'Born in Michigan? You're in the biobank:' engaging population biobank participants through Facebook advertisements. Public Health Genomics, in press.
24. Zickuhr K, Smith A. Digital Differences, 2012. http://pewinternet.org/ Reports/2012/Digital-differences/Overview.aspx.
25. Thiel D, Platt J, Liebert J, King S, Kardia SLR. Town Hall and Online Responses to Informed Consent Models for Public Health Biobanks. Exploring the ELSI Universe: 2011 Congress. National Human Genome Research Institute, Ethical Legal and Social Implications Program. Chapel Hill, NC. 12-14 April 2011.