PURPOSE: Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research. METHODS: Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18-34 years, 35-50, >50). RESULTS: Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, although they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. CONCLUSIONS: Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.
PURPOSE: Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research. METHODS: Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18-34 years, 35-50, >50). RESULTS: Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, although they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. CONCLUSIONS: Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.
Authors: Nancy E Kass; Marvin R Natowicz; Sara Chandros Hull; Ruth R Faden; Laura Plantinga; Lawrence O Gostin; Julia Slutsman Journal: J Law Med Ethics Date: 2003 Impact factor: 1.718
Authors: Santhi K Ganesh; Neil A Zakai; Frank J A van Rooij; Nicole Soranzo; Albert V Smith; Michael A Nalls; Ming-Huei Chen; Anna Kottgen; Nicole L Glazer; Abbas Dehghan; Brigitte Kuhnel; Thor Aspelund; Qiong Yang; Toshiko Tanaka; Andrew Jaffe; Joshua C M Bis; Germaine C Verwoert; Alexander Teumer; Caroline S Fox; Jack M Guralnik; Georg B Ehret; Kenneth Rice; Janine F Felix; Augusto Rendon; Gudny Eiriksdottir; Daniel Levy; Kushang V Patel; Eric Boerwinkle; Jerome I Rotter; Albert Hofman; Jennifer G Sambrook; Dena G Hernandez; Gang Zheng; Stefania Bandinelli; Andrew B Singleton; Josef Coresh; Thomas Lumley; André G Uitterlinden; Janine M Vangils; Lenore J Launer; L Adrienne Cupples; Ben A Oostra; Jaap-Jan Zwaginga; Willem H Ouwehand; Swee-Lay Thein; Christa Meisinger; Panos Deloukas; Matthias Nauck; Tim D Spector; Christian Gieger; Vilmundur Gudnason; Cornelia M van Duijn; Bruce M Psaty; Luigi Ferrucci; Aravinda Chakravarti; Andreas Greinacher; Christopher J O'Donnell; Jacqueline C M Witteman; Susan Furth; Mary Cushman; Tamara B Harris; Jing-Ping Lin Journal: Nat Genet Date: 2009-10-11 Impact factor: 38.330
Authors: Timothy Caulfield; Amy L McGuire; Mildred Cho; Janet A Buchanan; Michael M Burgess; Ursula Danilczyk; Christina M Diaz; Kelly Fryer-Edwards; Shane K Green; Marc A Hodosh; Eric T Juengst; Jane Kaye; Laurence Kedes; Bartha Maria Knoppers; Trudo Lemmens; Eric M Meslin; Juli Murphy; Robert L Nussbaum; Margaret Otlowski; Daryl Pullman; Peter N Ray; Jeremy Sugarman; Michael Timmons Journal: PLoS Biol Date: 2008-03-25 Impact factor: 8.029
Authors: Amy L McGuire; Melissa Basford; Lynn G Dressler; Stephanie M Fullerton; Barbara A Koenig; Rongling Li; Cathy A McCarty; Erin Ramos; Maureen E Smith; Carol P Somkin; Carol Waudby; Wendy A Wolf; Ellen Wright Clayton Journal: Genome Res Date: 2011-06-01 Impact factor: 9.043
Authors: Bradley D Freeman; Kevin Butler; Dragana Bolcic-Jankovic; Brian R Clarridge; Carie R Kennedy; Jessica LeBlanc; Sara Chandros Hull Journal: Chest Date: 2015-04 Impact factor: 9.410
Authors: Shira Rockowitz; Nicholas LeCompte; Mary Carmack; Andrew Quitadamo; Lily Wang; Meredith Park; Devon Knight; Emma Sexton; Lacey Smith; Beth Sheidley; Michael Field; Ingrid A Holm; Catherine A Brownstein; Pankaj B Agrawal; Susan Kornetsky; Annapurna Poduri; Scott B Snapper; Alan H Beggs; Timothy W Yu; David A Williams; Piotr Sliz Journal: NPJ Genom Med Date: 2020-07-06 Impact factor: 8.617