Attitudes to and experiences of genetic information and testing among professionals working in the context of adoption

Abstract

In the process of creating a care plan or finding a placement for children, assessment of their health and developmental needs will be undertaken. This can involve the interpretation of complex family history information and may also include undertaking and interpreting the results of genetic testing, when within professional guidelines. This study explores opinions, knowledge about and experiences of adoption professionals in relation to genetic information and testing in Wales. Semi-structured qualitative interviews were conducted with six social workers and seven medical advisers. The data were transcribed and thematically analysed. Themes included the challenges to collation of family history, how the willingness of professionals to undertake genetic testing in children awaiting adoption was altered by the availability (and non-availability) of family history information, and the uncertainty that genetic information can generate for professionals and prospective parents. Uncertainty for both professional groups emerged from apparent inconsistency in current practice and from concern over their own lack of genetic knowledge. As new genetic technologies increase the scope of uncertainty, there is a need for social workers and medical practitioners working in adoption to have a greater understanding of genetics alongside opportunities to discuss cases in a multidisciplinary setting when appropriate.

Psychological correlates of interest in genetic testing among Korean American adoptees and their parents

“…If adoptees are more reliant on genetic and ancestry testing to access important health and genealogy information, these ethical and clinical issues are particularly relevant to them. However, the field of genetic counseling has engaged with genetic testing of adoptees primarily in terms of identifying potential health problems as part of the adoption process (that is, prior to or around the time of adoption; American Society of Human Genetics Social Issues Committee, ; National Society of Genetic Counselors, ; Jackson & Burke, ). To date, little is known about genetic testing that adoptees may undergo well after their adoption due to their own or their parents' interest.…”