Background The challenges of seeking or communicating genetic risk information in adoption, and the importance of open communication about risk in families with Huntington's disease (HD) are well documented. Family breakdown, and the need for fostering and adoption can be more common in HD. However, there is little empirical evidence about adopters' and adoptees' experiences.
Aims (1) To describe and synthesise shared experiences of communication around adoption in HD and (2) to identify strategies for improving communication about HD between adoptees, adopters and adoption agencies.
Methods We present an anonymised synthesis of cases from the Aberdeen Huntington's genetics and management clinics and the Scottish Huntington's Youth Service. We describe our challenges and successes in supporting adoptees (or those in permanent foster care) at risk of HD and their adopters, with a focus on information sharing.
Results In some cases, difficulties arose when adoption agencies sought to reduce or remove contact between parent and child in order to “shelter” the child from the burden of growing up at risk. In others, adoptees were disadvantaged by too much information being given too soon. Strategies to improve the communication process will be discussed.
Conclusions These cases highlight: (1) the importance of improving quality of communication; (2) the potential for discrimination in the adoption and long-term fostering of children at risk of HD and (3) the potential burden for adopters who learn of a child's high risk. Together, genetics professionals and specialist voluntary organisations can offer complementary and synergistic input to adoption agencies and prospective adopters in order to improve the lives of adoptees from HD families.
- risk communication
- Huntington's disease