Community Involvement in Developing Policies for Genetic Testing: Assessing the Interests and Experiences of Individuals Affected by Genetic Conditions

7 Pages Posted: 24 Oct 2009

See all articles by Paul Steven Miller

Paul Steven Miller

University of Washington School of Law

Kira Apse

Harvard Catalyst

Sarah Gollust

University of Minnesota - Twin Cities

Barbara Fuller

Winthrop University

Barbara Biesecker

National Institutes of Health (NIH) - National Human Genome Research Institute

Date Written: January 1, 2005

Abstract

Because the introduction of genetic testing into clinical medicine and public health creates concerns for the welfare of individuals affected with genetic conditions, those individuals should have a role in policy decisions about testing. Mechanisms for promoting participation range from membership on advisory committees to community dialogues to surveys that provide evidence for supporting practice guidelines. Surveys can assess the attitudes and the experiences of members of an affected group and thus inform discussions about the community’s concerns regarding the appropriate use of a genetic test. Results of a survey of individuals affected with inherited dwarfism show how data can be used in policy and clinical practice contexts. Future research into the interests of affected communities should be pursued so that underrepresented voices can be heard.

Keywords: disability, community dialogue, genetic testing, public health, genetic condition, clinical research

Suggested Citation

Miller, Paul Steven and Apse, Kira and Gollust, Sarah and Fuller, Barbara and Biesecker, Barbara, Community Involvement in Developing Policies for Genetic Testing: Assessing the Interests and Experiences of Individuals Affected by Genetic Conditions (January 1, 2005). Available at SSRN: https://ssrn.com/abstract=1202482 or http://dx.doi.org/10.2139/ssrn.1202482

Paul Steven Miller (Contact Author)

University of Washington School of Law ( email )

William H. Gates Hall
Box 353020
Seattle, WA 98105-3020
United States
206-616-3137 (Phone)
206-543-2164 (Fax)

HOME PAGE: http://www.law.washington.edu/Directory/Profile.aspx?ID=148

Kira Apse

Harvard Catalyst ( email )

Children's Hospital
Cls14074, 300 Longwood Ave
Boston, MA 02115
United States
617-919-3009 (Phone)
617-919-2769 (Fax)

HOME PAGE: http://connects.catalyst.harvard.edu/Profiles/display/Person/84432

Sarah Gollust

University of Minnesota - Twin Cities ( email )

420 Delaware St. SE
Minneapolis, MN 55455
United States

Barbara Fuller

Winthrop University ( email )

Rock Hill, SC 29733-0001
United States

Barbara Biesecker

National Institutes of Health (NIH) - National Human Genome Research Institute ( email )

Building 31, Room B1B36
31 Center Dr, MSC 2073
Bethesda, MD 20892
United States
(301) 496-3979 (Phone)
(301) 480-3108 (Fax)

HOME PAGE: http://www.genome.gov/10001536

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