Should we respect parents’ views about which results to return from genomic sequencing?

Abstract

Genomic sequencing (GS) is now well embedded in clinical practice. However, guidelines issued by professional bodies disagree about whether unsolicited findings (UF)—i.e., disease-causing changes found in the DNA unrelated to the reason for testing—should be reported if they are identified inadvertently during data analysis. This extends to a lack of clarity regarding parents’ ability to decide about receiving UF for their children. To address this, I use an ethical framework, the Zone of Parental Discretion (ZPD), to consider which UF parents should be allowed to choose (not) to receive and examine how well this assessment aligns with existing professional recommendations. Assessment of guidelines shows recommendations ranging from leaving the decision to the discretion of laboratories through to mandatory reporting for UF for childhood onset, treatable/preventable conditions. The ZPD suggests that parents’ decisions should be respected, even where there is no expected benefit, provided that there is not sufficient evidence of serious harm. Using this lens, parents should be able to choose whether or not to know UF for adult-onset conditions in their children, but only insofar as there is insufficient evidence that this knowledge will cause harm or benefit. In contrast, parents should not be allowed to refuse receiving UF for childhood-onset medically actionable conditions. The ZPD is a helpful tool for assessing where it is appropriate to offer parents the choice of receiving UF for their children. This has implications for refinement of policy and laboratory reporting practices, development of consent forms, and genetic counselling practice.