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

Abstract

Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children’s “right to an open future.” It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children’s interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children’s interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.

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Acknowledgements

The CSER Consortium is funded by National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) (U01 HG006485 [Baylor College of Medicine], U01 HG006500 [Brigham and Women’s Hospital], U01 HG006546 [Children’s Hospital of Philadelphia], U01 HG006492 [Dana-Farber Cancer Institute], UM1 HG007301 [HudsonAlpha Institute], UM1 HG007292 [Kaiser Permanente], UM1 HG006508 [University of Michigan], U01 HG006487 [University of North Carolina], U01 HG006507 [University of Washington], R01 HG006615 [Boston Children’s Hospital], R21 HG006596 [Columbia University], R01 HG006600 [Columbia University], R21 HG006613 [Children’s Mercy Hospital], R21 HG006594 [Johns Hopkins University], R01 HG004500 [Mayo Clinic], R01 HG006618 [Seattle Children’s Hospital], R01 CA154517 [UC–San Francisco, Mayo College of Medicine, and University of Minnesota], R21 HG006612 [Vanderbilt University and McGill University], U01 HG007307 [University of Washington serving as the Coordinating Center]). ClinSeq (ZIA HG200387) is supported by the NHGRI Intramural Research Program. The authors thank the coordinating center of the Clinical Sequencing Exploratory Research (CSER) Consortium (University of Washington) for their support, and in particular Jeffrey Ou, who provided substantive support for this effort. Lucia Hindorff with NHGRI provided program staff support for this project. The authors also thank the following members of the CSER Consortium Pediatrics Working Group for participating in meetings to discuss the article as it was conceptualized and written: Benjamin Berkman (National Institutes of Health, Department of Bioethics), Barbara Bernhardt (University of Pennsylvania), Charlisse Caga-Anan (NCI), Ellen Wright Clayton (Vanderbilt University Medical Center), Aaron Goldenberg (Case Western Reserve University), Sara Chandros Hull (National Institutes of Health, Department of Bioethics), Steve Joffe (University of Pennsylvania), Ian Krantz (Children’s Hospital of Philadelphia), Michelle Lewis (John Hopkins Berman Institute of Bioethics), Wayne Liang (University of Alabama at Birmingham), Nicole Lockhart (NHGRI), Susana McCollum, Larry McCullough (Baylor College of Medicine), Amy McGuire (Baylor College of Medicine), Ali Noorbaksh (Baylor College of Medicine), Sarita Panchang (Baylor College of Medicine), D. Will Parsons (Baylor College of Medicine), Jacob Reiss (Kaiser Permanente Northwest), Myra Roche (University of North Carolina at Chapel Hill), Laura Rodriguez (NHGRI), Edward Romasko (Children’s Hospital of Philadelphia), Lainie Friedman Ross (University of Chicago), Richard Sharp (Mayo Clinic), Debra Skinner (University of North Carolina at Chapel Hill), Melody Slashinski (University of Massachusetts Amherst), Holly Tabor (Stanford University), Ashley Tomlinson (University of Pennsylvania), Susan Wolf (University of Minnesota), and Joon-Ho Yu (University of Washington). The authors also thank Leslie Ann McNolty (Center for Practical Bioethics) for helpful suggestions on revisions at several stages of the paper’s development, including the final draft. We would also like to thank Dena Davis (Lehigh University) who graciously served as a guest discussant for one of these meetings.

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Correspondence to Jeremy R. Garrett PhD.

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Garrett, J.R., Lantos, J.D., Biesecker, L.G. et al. Rethinking the “open future” argument against predictive genetic testing of children. Genet Med 21, 2190–2198 (2019). https://doi.org/10.1038/s41436-019-0483-4

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Keywords

  • adult-onset conditions
  • children’s interests
  • pediatric genetic testing
  • right to an open future
  • secondary findings

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