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Sarah E. Gollust, BA, Kira Apse, ScM, Barbara P. Fuller, JD, Paul Steven Miller, JD and Barbara B. Biesecker, MS

At the time of the study, Sarah E. Gollust was with the Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Md. Kira Apse is with the Division of Neurogenetics, Beth Israel Deaconess Medical Center, Boston, Mass. Barbara P. Fuller is with the Policy and Program Analysis Branch, National Human Genome Research Institute. At the time of the study, Paul Steven Miller was with the US Equal Employment Opportunity Commission, Washington, DC. Barbara B. Biesecker is with the Social and Behavioral Research Branch, National Human Genome Research Institute.

Correspondence: Requests for reprints should be sent to Barbara B. Biesecker, NHGRI/NIH, 10 Center Dr, Bldg 10, Rm 10C101, Bethesda, MD 20892 (e-mail: barbarab{at}nhgri.nih.gov).

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 that 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 of affected communities’ interests should be pursued so that underrepresented voices can be heard.

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