On the Potential Use of Genomics for Family Health History Information: Views of Adult Adoptees

Family health history is widely used to inform health prevention initiatives.  Adoptees represent one group who often lack access to this information, which may limit their opportunity to engage in actions that could improve health in the short and long term. Genomic testing may offer a tool that could provide information for those lacking health history.  Problematically, it is not known what the adoption community thinks about the lack of family history and the ways in which genomics might fill that gap. Using principles of Community Based Participatory Research, our study sought to document such perspectives.  Three focus groups were held in the Milwaukee Metro Area; 12 adult international and domestic adoptees participated (2 male, 10 female) representing 5 countries of origin (U.S., China, Korea, Chile, Peru).  We analyzed the transcripts using thematic content analysis.   Participant comments highlighted many aspects to consider related to genomics and family health history in the context of adoption, specifically: 1) the trustworthiness and use of genomic findings for reproductive and health decision-making; 2) protection from misuse and abuse of genomic data; and 3) confidence in the research study (with particular attention to whether the research was guided by individuals with personal connections to adoption).  Findings suggest a need to ensure reliability of genomic data; reinforce the call for proper security of data and oversight of the ways it is being used; and point to the potential value of including researchers who are a part of the community under study.