Title

Benefits and burdens of genetic carrier identification

Document Type

Article

Peer Reviewed

1

Publication Date

2-1-1997

NLM Title Abbreviation

West J Nurs Res

Journal/Book/Conference Title

Western journal of nursing research

Abstract

This qualitative study experiences of adults requesting genetic-carrier testing for four autosomal-recessive and X-linked-recessive disorders. The sample consisted of 34 adults with a positive family history or membership in an ethnic group at risk for the inherited disorder. A semistructured interview guide was used to collect data during an interview 1 month after receipt of test results. Noncarriers experienced benefits of emotional relief and freedom to move ahead with reproductive planning. Carriers experienced burdens of sadness and loss of reproductive expectations. Some subjects in both groups experienced difficulty disclosing results to selected family members and expressed concerns regarding disclosure of testing to insurance providers.

Keywords

Carriers, Genetic, Genetic Screening -- Psychosocial Factors, Funding Source, Exploratory Research, Descriptive Research, Qualitative Studies, Interview Guides, Audiorecording, Truth Disclosure, Data Analysis, Adult, Middle Age, Aged, Male, Female, Human

Published Article/Book Citation

Western journal of nursing research, 19:1 (1997) pp.71-81.

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URL

https://ir.uiowa.edu/nursing_pubs/1476