Integrating Genetic Information into the Electronic Health Record: The Case of Adolescents’ Revelation of Misattributed Parentage

In the near future, the electronic health record (EHR) is likely to include patients’ genetic information, in addition to other clinical information and administrative data. This warrants some preparatory thought. Presently, in many jurisdictions, adolescents can self-access their EHR, as an acknowledgment of their relative autonomy in areas concerning their health. The foreseeable routine integration of genetic information into the EHR could result, inter alia, in adolescents’ inadvertent exposure to misattributed parentage findings emerging from genetic investigations, creating clinical challenges and ethical difficulties. The article reviews policy on the underexplored area of sharing genetic (non-)relatedness information with adolescents. It then considers the clinical perspective of adolescents revealing genetic non-relatedness through the EHR. Next, the article comparatively investigates adolescents’ health privacy and EHR-access laws and policies across several jurisdictions. After that, it analyses applicable ethical principles, such as minors’ right to know their genetic origins; parents’ (contentious) right to know that their child is genetically unrelated to them; the best interests of the child; and minors’ autonomy. Finally, we offer an implementable model in which the minor makes an informed choice of consent option, genetic results are segregated from other EHR data, differential access is applied to genetic information; and pre-disclosure medical counselling for adolescent patients is mandated.