Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2009 Sep;4(3):99-111.
doi: 10.1525/jer.2009.4.3.99.

Prospective biorepository participants' perspectives on access to research results

Laura M Beskow  1 , Sondra J Smolek
Affiliations

Prospective biorepository participants' perspectives on access to research results

Laura M Beskow et al. J Empir Res Hum Res Ethics. 2009 Sep.

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.

PubMed Disclaimer

Figures

FIG. 1
FIG. 1
Biorepository Consent Form Text Concerning Access to Research Results.
FIG. 2
FIG. 2
Interview Questions Concerning Access to Research Results.
See this image and copyright information in PMC

References

    1. Beskow LM, Burke W, Merz JF, Barr PA, Terry S, Penchaszadeh VB, Gostin LO, Gwinn M, Khoury MJ. Informed consent for population-based research involving genetics. JAMA: The Journal of the American Medical Association. 2001;286(18):2315–2321. - PubMed
    1. Beskow LM, Dean E. Informed consent for biorepositories: Assessing prospective participants’ understanding and opinions. Cancer Epidemiology, Biomarkers & Prevention. 2008;17(6):1440–1451. - PubMed
    1. Bookman EB, Langehorne AA, Eckfeldt JH, Glass KC, Jarvik GP, Klag M, Koski G, Motulsky A, Wilfond B, Manolio TA, Fabsitz RR, Luepker RV. Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group. American Journal of Medical Genetics, Part A. 2006;140A(10):1033–1040. - PMC - PubMed
    1. Clayton EW, Ross LF. Implications of disclosing individual results of clinical research. JAMA: The Journal of the American Medical Association. 2006;295(1):37. - PubMed
    1. Dixon-Woods M, Jackson C, Windridge KC, Kenyon S. Receiving a summary of the results of a trial: Qualitative study of participants’ views. British Medical Journal. 2006;332(7535):206–210. - PMC - PubMed

Publication types