Predictive Genetic Testing of Children for Adult‐Onset Conditions: Negotiating Requests with Parents

Abstract

Healthcare professionals (HCPs) regularly face requests from parents for predictive genetic testing of children for adult-onset conditions. Little is known about how HCPs handle these test requests, given that guidelines recommend such testing is deferred to adulthood unless there is medical benefit to testing before that time. Our study explored the process of decision-making between HCPs and parents. Semi-structured interviews were conducted with 34 HCPs in 8 regional genetic services across the UK, and data were thematically analysed. We found that instead of saying ‘yes’ or ‘no’ to such requests, many HCPs framed the consultation as an opportunity to negotiate the optimal time of testing. This, they argued, facilitates parents’ considered decision-making, since parents’ eventual decisions after requesting a test was often to defer testing their child. In cases where parents’ requests remained a sustained wish, most HCPs said they would agree to test, concluding that not testing would not serve the child’s wider best interest. As a strategy for determining the child’s best interest and for facilitating shared decision-making, we recommend that HCPs re-frame requests for testing from parents as a discussion about the optimal time of testing for adult-onset disease.

What is the meaning of a ‘genomic result’ in the context of pregnancy?

“…For example, finding that a fetus would have an increased risk of breast cancer from the third decade of life onwards(21). In a postnatal setting, professional guidance suggests that children should not usually be tested for adult-onset conditions known in their families until they are old enough to decide for themselves whether they might want this information, even if their parents request it(22).Should fetuses have similar protections against their parents finding out about possible health risks in their far future? Parents may express a strong interest in knowing such information, but what, if any, boundaries should be placed around what it is reasonable for them to know.…”

Rethinking the “open future” argument against predictive genetic testing of children

“…Thus respect for the child’s right to an open future supports the growing consensus in the United States against allowing parents to choose such testing for their children.” 20 This interpretation of the right to an open future has, in turn, shaped many arguments against predictive genetic testing in the medical and bioethics literature and in clinical settings over the past two decades. 11,14,35,36,50–58 For example, in a 2017 article written for an audience of genetic counselors, Fenwick and colleagues summarize the status quo as follows: “The recommendations from these guidelines are well-established and have not changed significantly over time. Their primary message is that unless testing has current medical benefit, it should be deferred until a child is old enough to make her/his own decision protecting what Feinberg called the child’s right to an open future.” 14…”

“…Numerous literature reviews and qualitative surveys indicate that this argument is perhaps the most frequently cited objection to predictive genetic testing among clinicians and bioethicists. 11–14 Moreover, unlike the concern about immediate psychosocial harms, the violation of a moral right is a value claim that cannot be refuted by empirical evidence. 13 Hence, this argument against predictive genetic testing likely will become even more important as the evidence base develops and shifts.…”

Special Issue Introduction: Dealing with Psychological and Social Complexity in Genetic Counseling

“…We include two papers focusing on parents talking to children about genetic testing, one from the UK and another from the US (Fenwick et al 2016;Patenaude and Schneider 2016). This is a topic that has generated considerable professional soul-searching and ethical debate over the decades, especially during the period when genetic testing was considered research and there were few or no interventions that could be offered.…”