Birth Family Health History: Adopters' Perspectives on Learning about their Child's Health Inheritance

Abstract

Birth family health history is shared with prospective adopters to help them understand a child's future health risks. But guidelines for health professionals indicate that such third-party information should not be shared without the consent of birth parents. In practice this can be difficult to achieve. Catherine Hill and Maria Edwards' survey of 57 adoptions sought to explore the views and experiences of adopters about the value of this information to both themselves and their child. Absence of information, particularly with respect to paternal history, was common and resulted in adverse consequences for children and an impoverished sense of identity. Adopters felt that lack of information also limited their understanding of the child and therefore their ability to offer therapeutic parenting; they were ‘parenting in the dark’. A majority expressed strong views that it was their child's right to have this information; a minority felt that confidentiality of birth family health information should remain a paramount consideration. These data furnish the debate with an important missing dimension from those whose lives are potentially enriched or impaired by the quality of information shared.

Implementation of Health Recommendations after Initial Statutory Health Assessment

“…The difficulty in obtaining this information from birth parents who are not engaging with services is frequently cited by social workers and is acknowledged. However, it must be noted that up to 75% of adopters in an Adoption UK study in 2008 (Hill and Edwards, 2009) felt that lack of information about their child's birth family history had been an issue. In addition to the practical aspects noted above, the study highlighted the importance of family history as forming part of a child's identity.…”

Adopting genetics: motivations and outcomes of personal genomic testing in adult adoptees

“…Adopted individuals constitute one group whose health care may be affected by absent family history information. 9 – 11 Nevertheless, adoptees can face ethical and practical challenges when attempting to learn genetic risk information. 12 Anecdotal reports from PGT companies and in the media suggests that adoptees have used PGT from Family Tree DNA and 23andMe, Inc. (23andMe) to find biological family members and learn ancestry information.…”

Adoption and the communication of genetic risk: experiences in Huntington disease

“…Genetic information can facilitate the prevention, treatment or early diagnosis of genetic illnesses and can inform reproductive decision‐making. Yet for individuals who have been adopted, this information may be missing, incomplete, or not readily accessible (23). We demonstrate both ethical and practical challenges in the search for and communication of genetic information for adoptees and their birth relatives.…”