Disclosing Genetic Test Results to Family Members

Overview

Journal J Nurs Scholarsh

Publisher Wiley

Specialty Nursing

Date 2005 Apr 9

PMID 15813582

Citations 37

Authors

Rebekah J Hamilton

Barbara J Bowers

Janet K Williams

Affiliations

Soon will be listed here.

Abstract

Purpose: To describe the experiences of disclosing genetic test results to biological family members among people tested for Huntington's disease (HD) or hereditary breast and ovarian cancer (HBOC).

Design: Grounded theory methodology.

Methods: Open-ended, tape-recorded interviews were conducted with 29 participants-24 who had received genetic test results and 5 who had decided not to be tested. The participants were from three countries, including 15 U.S. states. Interviews occurred from 2 months to 4 years after receiving test results. Tapes were transcribed and analyzed for conceptual categories to describe the experience of disclosing genetic test results.

Findings: Participants described the effects and meaning of disclosing test results to their various family members, and they selectively disclosed results to family members. The timing of disclosure was influenced by the particular disease and the person's perceived need to prepare. Disclosure of genetic test results brought the risk of HD and HBOC to the foreground, not only for the person tested but for family members as well.

Conclusions: This study elucidated the perspective of the "discloser" and the consequences they anticipated and experienced.

Citing Articles

Anticipated Responses to Genetic Testing for Alzheimer's Disease Susceptibility among Latinos in Northern Manhattan.

Meng A, Caban M, Tran E, Wetmore J, Ottman R, Siegel K J Community Health. 2024; .

PMID: 39720972 DOI: 10.1007/s10900-024-01434-6.

Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM).

Ballard L, Band R, Lucassen A Eur J Hum Genet. 2023; 31(9):988-1002.

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The Impact of Proband Indication for Genetic Testing on the Uptake of Cascade Testing Among Relatives.

Schmidlen T, Bristow S, Hatchell K, Esplin E, Nussbaum R, Haverfield E Front Genet. 2022; 13:867226.

PMID: 35783293 PMC: 9243226. DOI: 10.3389/fgene.2022.867226.

Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers.

Dean M, Tezak A, Johnson S, Pierce J, Weidner A, Clouse K Patient Educ Couns. 2021; 104(4):720-725.

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Psychosocial and Clinical Factors Associated with Family Communication of Cancer Genetic Test Results among Women Diagnosed with Breast Cancer at a Young Age.

Elrick A, Ashida S, Ivanovich J, Lyons S, Biesecker B, Goodman M J Genet Couns. 2016; 26(1):173-181.

PMID: 27422778 PMC: 5239754. DOI: 10.1007/s10897-016-9995-0.