Affiliation:
1. Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
Abstract
We advocate for the incorporation of a new clause into the consent forms for pediatric genetic testing that clearly states that any incidental information about parentage will not be revealed, regardless of the result. Using a case of misattributed maternity, we examine both the pro- and antidisclosure arguments. In the absence of arguments that clearly demonstrate irrevocable harm from nondisclosure and against a backdrop of arguments that compellingly highlight the potential for serious harms from disclosing incidental findings of nonparentage, we advocate for a universal, institution-wide policy of nondisclosure. Our proposed policy of universal nondisclosure not only provides a viable solution to the disclosure dilemma but also empowers patients to know what testing is available to them and to seek it out on their own terms, fully informed. With an easily implemented consent change, clinics can take a clear and firm stance in the disclosure debate. As a result, patients will be protected, policy will be widely understood, and cases will be resolved consistently and clearly.
Publisher
American Academy of Pediatrics (AAP)
Subject
Pediatrics, Perinatology and Child Health
Cited by
20 articles.
订阅此论文施引文献
订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献