Prospective biorepository participants' perspectives on access to research results

J Empir Res Hum Res Ethics. 2009 Sep;4(3):99-111. doi: 10.1525/jer.2009.4.3.99.


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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Biological Specimen Banks*
  • Disclosure*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Research Subjects / psychology*