Community Involvement in Developing Policies for Genetic Testing

Assessing the Interests and Experiences of Individuals Affected by Genetic Conditions

Bibliographic Data

ID11020453
AuthorsSarah E Gollust (0000-0001-6109-5953, 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....), Kira Apse (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 P Fuller (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....), Paul Steven Miller (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 Bowles Biesecker (0000-0001-9665-8963, National Human Genome Research Institute)
Year2005
Volume95
Issue1
Pages35-41
Publication date2005-01-01
Peer ReviewedYes
Open AccessNo
TypeARTICLE
VenueAmerican Journal of Public Health (JOURNAL)
Journal identifiersISSN: 0090-0036 • E-ISSN: 1541-0048
PublisherAmerican Public Health Association (PUBLISHER • US)
DOI10.2105/ajph.2003.025734
PMID15623855
PMCIDPMC1449847
OpenAlexW2127648469
LanguageEN
Citations received8
References cited88

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

Biology · Environmental health · Family medicine · Genetic testing · Political science · Public health · Public relations · Test (biology) · Welfare · BRCA gene mutations in cancer · Ethics in Clinical Research · Genomics and Rare Diseases · Law · Medicine · Nursing · Psychology