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
. 2014 Jul;5(3):205-13.
doi: 10.1007/s12687-013-0175-8. Epub 2013 Dec 5.

Public attitudes regarding the use of electronic health information and residual clinical tissues for research

Jeffrey R Botkin  1 , Erin Rothwell, Rebecca Anderson, Louisa A Stark, Joyce Mitchell
Affiliations

Public attitudes regarding the use of electronic health information and residual clinical tissues for research

Jeffrey R Botkin et al. J Community Genet. 2014 Jul.

Abstract

Use of electronic medical records (EMR) and residual clinical biospecimens have become important for the conduct of biomedical research. Currently, human subjects' protection regulations permit much of this research to be conducted without individual informed consent, posing a risk to biomedical research from public objection. We sought to understand public attitudes regarding access to EMRs and residual clinical biospecimens. This article reports the results of 12 focus groups with 131 participants conducted in Utah, Washington, Arizona, and Minnesota. Results indicate strong support for biomedical and genetic research in general and clear support for improved patient education regarding research access to individual data and biospecimens. Our participants were supportive of an opt-out approach to patient decision-making regarding research access to clinical data and biospecimens for research in general.

PubMed Disclaimer

References

    1. Brothers KB, Morrison DR, Clayton EW. Two large-scale surveys on community attitudes toward an opt-out biobank. [Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov’t] Am J Med Genet A. 2011;155A(12):2982–2990. - PMC - PubMed
    1. Kaufman D, Bollinger J, Dvoskin R, Scott J. Preferences for opt-in and opt-out enrollment and consent models in biobank research: a national survey of Veterans Administration patients. Genet Med. 2012 - PubMed
    1. Mason J. Qualitative Researching. London: Sage Publications Ltd.; 2002.
    1. Miles M, Huberman MM. Qualitative Data Analysis: An Expanded Sourcebook. 2. Thousand Oaks CA: Sage Publications, Inc.; 1994.
    1. Morgan DL. Qualitative content analysis: a guide to paths not taken. Qual Health Res. 1993;3(1):112–121. doi: 10.1177/104973239300300107. - DOI - PubMed

LinkOut - more resources