Prospective biorepository participants' perspectives on access to research results.


Journal Article

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.

Full Text

Cited Authors

  • Beskow, LM; Smolek, SJ

Published Date

  • September 2009

Published In

Volume / Issue

  • 4 / 3

Start / End Page

  • 99 - 111

PubMed ID

  • 19754239

Pubmed Central ID

  • 19754239

Electronic International Standard Serial Number (EISSN)

  • 1556-2654

International Standard Serial Number (ISSN)

  • 1556-2646

Digital Object Identifier (DOI)

  • 10.1525/jer.2009.4.3.99


  • eng