Prospective Biorepository Participants' Perspectives on Access to Research Results
Creator
Beskow, Laura M.
Smolek, Sondra J.
Bibliographic Citation
Journal of Empirical Research on Human Research Ethics 2009 September; 4(3): 99-111
Abstract
DISCLOSURE OF INDIVIDUAL RESEARCH results to research participants has been the subject of professional guidelines as well as scholarly commentary, yet controversy remains. To gather data on participant perspectives, we interviewed 40 individuals from the Durham, North Carolina area about a biorepository consent form and conducted an in-depth analysis of responses to a series of questions concerning access to research results. Cross-cutting themes emerged about (1) the nature of research; (2) the nature of research results; (3) expectations concerning access to research results; and (4) practical issues in providing access to research results. Our findings highlight the importance for sound policy development of soliciting stakeholder input, and exploring the complexities behind their evaluations.
Permanent Link
Find in a Library.Full Text from Publisher
http://timetravel.mementoweb.org/memento/2009/http://caliber.ucpress.net/loi/jer
http://hdl.handle.net/10822/1027132
Date
2009-09Collections
Metadata
Show full item recordRelated items
Showing items related by title, author, creator and subject.
-
Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.
Fabsitz, Richard R.; McGuire, Amy; Sharp, Richard R.; Puggal, Mona; Beskow, Laura M.; Biesecker, Leslie; Bookman, Ebony; Burke, Wylie; Burchard, Esteban Gonzalez; Church, George; Clayton, Ellen Wright; Eckfeldt, John H.; Fernandez, Conrad V.; Fisher, Rebecca; (2010-12-01)In January 2009, the National Heart, Lung, and Blood Institute convened a 28-member multidisciplinary Working Group to update the recommendations of a 2004 National Heart, Lung, and Blood Institute Working Group focused ...