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Keywords:

  • adoption;
  • communication;
  • discrimination;
  • genetic information;
  • Huntington disease

Bombard Y, Semaka A, Hayden MR. Adoption and the communication of genetic risk: experiences in Huntington disease.

Adoption can present significant challenges when seeking or communicating genetic risk information. Adoption agencies can use genetic information to determine the eligibility of prospective adoptive parents and to establish a child's suitability for adoption. We describe experiences and implications of communicating genetic risk for Huntington disease (HD) in the context of adoption. A secondary analysis was employed using data collected from a cross-sectional survey (n = 233) and two qualitative studies on the psychosocial effects of predictive testing for HD. We demonstrate several ethical and practical challenges in the search for and communication of genetic information for adoptees and their birth relatives. We also found that concern for adoption discrimination was reported by 13.7% of survey respondents (n = 32). Concerns were higher among tested respondents than those who had not been tested (n = 29 vs n = 3, p = 0.010). However, more respondents were concerned about being discriminated based on their family history (FHx) vs their genetic test results (GTR) (concern based on FHx: n = 18 vs based on GTR: n = 1 vs based on both: n =10). These findings contribute to the limited empirical literature by offering evidence on the experiences and implications of communicating genetic risk information in the context of adoption with reference to HD.