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
Multicenter Study
. 2008 Nov;8(11):36-43.
doi: 10.1080/15265160802513093.

Public expectations for return of results from large-cohort genetic research

Juli Murphy  1 , Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, Kathy Hudson
Affiliations
Multicenter Study

Public expectations for return of results from large-cohort genetic research

Juli Murphy et al. Am J Bioeth. 2008 Nov.

Abstract

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.

PubMed Disclaimer

Comment in

References

    1. [May 16, 2008]. 23 andMe. http://www.23andme.com.
    1. Asai A, Ohnishi M, Nishigaki E, Sekimoto M, Fukuhara S, Fukui T. Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: Preliminary findings based on focus group interviews. BMC Medical Ethics. 2002 Jan 9;3:E1. - PMC - PubMed
    1. Beskow LM. Considering the nature of individual research results. The American Journal of Bioethics: AJOB. 2006 Nov-Dec;6(6):38, 40. author reply W10−2. - PubMed
    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 Nov 14;286(18):2315–21. - PubMed
    1. Bookman EB, Langehorne AA, Eckfeldt JH, Glass KC, Jarvik GP, Klag M, Koski G, et al. Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group. American Journal of Medical Genetics.Part A. 2006 May 15;140(10):1033–40. - PMC - PubMed

Publication types

MeSH terms