Family history and adoption in the UK: conflicts of interest in medical disclosure

Technical report: ethical and policy issues in genetic testing and screening of children

“…[96][97][98] The adopted child or child born of donor gametes has a medical interest in knowing his or her family genetic history. 103 Despite debate about whether such knowledge is in the child's overall best interest 104 and whether the child's interest always trumps other familial interests, [104][105][106] there is a persistent call for access to genetic parentage information on reaching adulthood, even if donors or relinquishing parents were promised anonymity. 104,[107][108][109][110] For discussion about the role of the physician in facilitating communication about these issues, see the AAP statement on the topic.…”

Medical adviser meetings with prospective carers: an evaluation of service

“…Situations where medical advisers do not have the consent of birth parents to share health information with prospective long-term carers continue to be of concern. Hill and colleagues (2010) highlight the tensions between parental rights to privacy and the rights of the child to full health history, and call for ‘more specific guidance’ in relation to information disclosure in adoption. The chapter on confidentiality and information sharing in Promoting the Health of Children in Public Care (Conroy-Harris and Feast, 2015) thoroughly considers the sharing of relevant health information concerning children.…”

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

“…Historically, it predominantly involved the placement of relinquished children: those taken into care because the biological family chose not to, or could not, raise them. In contrast, children from many backgrounds now enter care through decisions made by local authorities, often having been removed from birth families following neglect or abuse (Hill, et al., 2010).…”

“…Parker and colleagues (2016) describe how information sharing is an essential facet of assessment of each child, maintaining a focus on the child’s best interests. Others have also considered the challenges of collecting and disclosing information in this process (Acharyya, 2000; Hill, et al., 2010), particularly regarding the quality of care requirements and the legality of information sharing within the UK.…”