Abstract
Exome sequencing and whole genome sequencing (ES/WGS) can provide parents with a wide range of genetic information about their children, and adoptive parents may have unique issues to consider regarding possible access to this information. The few papers published on adoption and genetics have focused on targeted genetic testing of children in the pre-adoption context. There are no data on adoptive parents’ perspectives about pediatric ES/WGS, including their preferences about different kinds of results, and the potential benefits and risks of receiving results. To explore these issues, we conducted four exploratory focus groups with adoptive parents (N = 26). The majority lacked information about their children’s biological family health history and ancestry, and many viewed WGS results as a way to fill in these gaps in knowledge. Some expressed concerns about protecting their children’s future privacy and autonomy, but at the same time stated that WGS results could possibly help them be proactive about their children’s health. A few parents expressed concerns about the risks of WGS in a pre-adoption context, specifically about decreasing a child’s chance of adoption. These results suggest that issues surrounding genetic information in the post-adoption and ES/WGS contexts need to be considered, as well as concerns about risks in the pre-adoption context. A critical challenge for ES/WGS in the context of adoption will be balancing the right to know different kinds of genetic information with the right not to know. Specific guidance for geneticists and genetic counselors may be needed to maximize benefits of WGS while minimizing harms and prohibiting misuse of the information in the adoption process.
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Acknowledgements
We would like to thank all the adoptive parents who participated in this study; World Association for Children and Parents (WACAP) and Adoptive Friends and Families of Greater Seattle (AFFGS) for supporting recruitment efforts; Odessa Brown Children’s Clinic for hosting focus groups; Sue Trinidad, Jacqueline Stock, Amy Lemke, and Jennifer Merritt for contributing to the study’s early development; and Amy Lemke, Seema Jamal, Jennifer Merritt and Anna Tabor for providing feedback on the analysis and/or manuscript. Our work was supported by a grant from the National Institutes of Health/National Human Genome Research Institute (5ROOHG004316).
Conflict of Interest
Julia Crouch, Joon-Ho Yu, Aditi G. Shankar, and Holly K. Tabor declare that they have no conflict of interest.
Informed Consent
All procedures followed were in accordance with the ethical standards of the University of Washington Institutional Review Board and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all participants.
Human and Animal Rights
This article does not contain any studies with animals performed by any of the authors.
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Crouch, J., Yu, JH., Shankar, A.G. et al. “We Don’t Know Her History, Her Background”: Adoptive Parents’ Perspectives on Whole Genome Sequencing Results. J Genet Counsel 24, 67–77 (2015). https://doi.org/10.1007/s10897-014-9738-z
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DOI: https://doi.org/10.1007/s10897-014-9738-z