期刊
GENETICS IN MEDICINE
卷 11, 期 12, 页码 880-889出版社
ELSEVIER SCIENCE INC
DOI: 10.1097/GIM.0b013e3181bfd212
关键词
genetic testing; risk; illness experiences; doctor-patient communication; stigma
资金
- National Human Genome Research Institute [5-R01-HG002431-01]
Purpose: To explore many questions raised by genetics concerning personal identities that have not been fully investigated. Methods: We interviewed in depth, for 2 hours each, 64 individuals who had or were at risk for Huntington disease, breast cancer, or alpha-I antitrypsin deficiency. Results: These individuals struggled with several difficult issues of identity. They drew on a range of genotypes and phenotypes (e.g., family history alone; mutations, but no symptoms; or symptoms). They often felt that their predicament did not fit preexisting categories well (e.g., sick, healthy, disabled, predisposed), due in part to uncertainties involved (e.g., unclear prognoses, since mutations may not produce symptoms). Hence, individuals varied in how much genetics affected their identity, in what ways, and how negatively. Factors emerged related to disease, family history, and other sources of identity. These identities may, in turn, shape disclosure, coping, and other health decisions. Conclusions: Individuals struggle to construct a genetic identity. They view genetic information in highly Subjective ways, varying widely in what aspects of genetic information they focus on and how. These data have important implications for education of providers (to assist patients with these issues), patients, and family members; and for research, to understand these issues more fully. Genet Med 2009:11(12): 880-889.
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