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J Law Med Ethics. 2016 Jun;44(2):292-308. doi: 10.1177/1073110516654123.

Raising Genomic Citizens: Adolescents and the Return of Secondary Genomic Findings.

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Maya Sabatello, LL.B., Ph.D., is an Assistant Professor of Clinical Bioethics at the Department of Psychiatry, Columbia University College of Physicians and Surgeons; a Research Scientist at the NY State Psychiatric Institute; a faculty member at Columbia's Institute for the Study of Human Rights; and the co-director of Columbia's Precision Medicine: Ethics, Politics, and Culture project. Her research is interdisciplinary and cross-cultural, and focuses on law, society and disability; assisted reproduction; and the ethical, legal, and social implications of genetics, especially in pediatric and judicial settings. Paul S. Appelbaum, M.D., is the Elizabeth K. Dollard Professor of Psychiatry, Medicine, and Law, and Director, Division of Law, Ethics and Psychiatry, Department of Psychiatry, College of Physicians and Surgeons of Columbia University; a Research Psychiatrist at the NY State Psychiatric Institute; and an affiliated faculty member, Columbia Law School. He directs Columbia's Center for Research on Ethical, Legal, and Social Implications of Psychiatric, Neurologic, and Behavioral Genetics, and heads the Clinical Research Ethics Core for Columbia's Clinical and Translational Science Award program.


Whole genome and exome sequencing (WGS/WES) techniques raise hope for a new scale of diagnosis, prevention, and prediction of genetic conditions, and improved care for children. For these hopes to materialize, extensive genomic research with children will be needed. However, the use of WGS/WES in pediatric research settings raises considerable challenges for families, researchers, and policy development. In particular, the possibility that these techniques will generate genetic findings unrelated to the primary goal of sequencing has stirred intense debate about whether, which, how, and when these secondary or incidental findings (SFs) should be returned to parents and minors. The debate is even more pronounced when the subjects are adolescents, for whom decisions about return of SFs may have particular implications. In this paper, we consider the rise of "genomic citizenship" and the main challenges that arise for these stakeholders: adolescents' involvement in decisions relating to return of genomic SFs, the types of SFs that should be offered, privacy protections, and communication between researchers and adolescents about SFs. We argue that adolescents' involvement in genomic SF-related decisions acknowledges their status as valuable stakeholders without detracting from broader familial interests, and promotes more informed genomic citizens.

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