Prospective Biorepository Participants' Perspectives on Access to Research Results

Bibliographic Data

ID12807484
AuthorsLaura M Beskow (0000-0002-9314-1915, Duke University, corresponding author), Sondra J Smolek
Year2009
Volume4
Issue3
Pages99-111
Publication date2009-09-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueJournal of Empirical Research on Human Research Ethics (JOURNAL)
Journal identifiersISSN: 1556-2646 • E-ISSN: 1556-2654
PublisherSAGE Publishing (PUBLISHER • US)
DOI10.1525/jer.2009.4.3.99
PMID19754239
PMCIDPMC2892166
OpenAlexW2089914326
LanguageEN
Citations received5
References cited23

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

Alternative medicine · Biobank · Biorepository · Engineering ethics · Informed consent · Library science · Medical education · Political science · Public relations · Research design · Research ethics · Social science · Sociology · Stakeholder · Subject (documents · Computer Science · Ethics in Clinical Research · Health Policy Implementation Science · Medicine · Pharmaceutical industry and healthcare · Psychology

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