caa a22 4500 605544212 CHVBK 20210128100930.0 cr unu---uuuuu 210128e20150201xx s 000 0 eng 10.1007/s10897-014-9738-z doi (NATIONALLICENCE)springer-10.1007/s10897-014-9738-z "We Don't Know Her History, Her Background”: Adoptive Parents' Perspectives on Whole Genome Sequencing Results [Elektronische Daten] [Julia Crouch, Joon-Ho Yu, Aditi Shankar, Holly Tabor] 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. National Society of Genetic Counselors, Inc., 2014 Exome sequencing nationallicence Whole genome sequencing nationallicence Adoption nationallicence Autonomy nationallicence Return of results nationallicence Ancestry nationallicence Direct-to-consumer genetic testing nationallicence Crouch Julia Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, M/S C9S-6, 98101, Seattle, WA, USA aut Yu Joon-Ho Department of Pediatrics, University of Washington, 98195, Seattle, WA, USA aut Shankar Aditi Department of Pediatrics, University of Washington, 98195, Seattle, WA, USA aut Tabor Holly Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, M/S C9S-6, 98101, Seattle, WA, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 67-77 1059-7700 24:1<67 2015 24 10897 https://doi.org/10.1007/s10897-014-9738-z text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9738-z text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Crouch Julia Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, M/S C9S-6, 98101, Seattle, WA, USA aut NATIONALLICENCE 700 1- Yu Joon-Ho Department of Pediatrics, University of Washington, 98195, Seattle, WA, USA aut NATIONALLICENCE 700 1- Shankar Aditi Department of Pediatrics, University of Washington, 98195, Seattle, WA, USA aut NATIONALLICENCE 700 1- Tabor Holly Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, M/S C9S-6, 98101, Seattle, WA, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 67-77 1059-7700 24:1<67 2015 24 10897