Community involvement in developing policies for genetic testing: assessing the interests and experiences of individuals affected by genetic conditions.
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...
| Publicado en: | American Journal of Public Health Vol. 95; no. 1; pp. 35 - 42 |
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| Autores principales: | , , , , |
| Formato: | case study Journal Article |
| Publicado: |
American Public Health Association
Jan2005
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=106611694&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 106611694 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 00900036 APH jtl: American Journal of Public Health issn: 00900036 maglogo: N pubinfo: dt: Jan2005 vid: 95 iid: 1 pid: 44 pub: American Public Health Association place: Washington, District of Columbia artinfo: ui: 106611694 15556927 2005073029 10.2105/AJPH.2003.025734 NLM15623855 106611694 ppf: 35 ppct: 7 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Community involvement in developing policies for genetic testing: assessing the interests and experiences of individuals affected by genetic conditions. aug: au: Gollust SE Apse K Fuller BP Miller S Biesecker BB affil: Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD sug: subj: Community-Institutional Relations Consumer Participation Genetic Screening Utilization Health Policy Patient Attitudes Policy Making Attitude to Disability Collaboration Community Role Ethics Fetus Genetic Screening In Utero Genetics Growth Disorders Familial and Genetic Patient Advocacy Political Participation Research Survey Research Fetus, conception to birth ab: 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. pubtype: Academic Journal doctype: case study Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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