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Mechanisms for promoting participation range from membership on advisory committees to community dialogues to surveys that provide evidence for supporting practice guidelines. <\/jats:p><jats:p> Surveys can assess the attitudes and the experiences of members of an affected group and thus inform discussions about that community\u2019s 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. <\/jats:p><jats:p> Future research of affected communities\u2019 interests should be pursued so that underrepresented voices can be heard. <\/jats:p>","DOI":"10.2105\/ajph.2003.025734","type":"journal-article","created":{"date-parts":[[2005,1,6]],"date-time":"2005-01-06T19:20:53Z","timestamp":1105039253000},"page":"35-41","source":"Crossref","is-referenced-by-count":29,"title":["Community Involvement in Developing Policies for Genetic Testing: Assessing the Interests and Experiences of Individuals Affected by Genetic Conditions"],"prefix":"10.2105","volume":"95","author":[{"given":"Sarah E.","family":"Gollust","sequence":"first","affiliation":[{"name":"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. 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