Genomics, Big Data, and Broad Consent: a New Ethics Frontier for Prevention Science

Prevention Science : the Official Journal of the Society for Prevention Research
Celia B Fisher, Deborah M Layman

Abstract

Emerging technologies for analyzing biospecimens have led to advances in understanding the interacting role of genetics and environment on development and individual responsivity to prevention and intervention programs. The scientific study of gene-environment influences has also benefited from the growth of Big Data tools that allow linking genomic data to health, educational, and other information stored in large integrated datasets. These advances have created a new frontier of ethical challenges for scientists as they collect, store, or engage in secondary use of potentially identifiable information and biospecimens. To address challenges arising from technological advances and the expanding contexts in which potentially identifiable information and biospecimens are collected and stored, the Office of Human Research Protections has revised federal regulations for the protection of human subjects. The revised regulations create a new format, content, and transparency requirements for informed consent, including a new mechanism known as broad consent. Broad consent offers participants a range of choices regarding consent for the storage and future use of their personally identifiable data. These regulations have important imp...Continue Reading

References

May 17, 1996·The Science of the Total Environment·P Grandjean, M Sorsa
Aug 6, 2002·Science·Avshalom CaspiRichie Poulton
Dec 20, 2003·Lancet·Gopal Sreenivasan
Jan 15, 2008·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·David KaufmanKathy Hudson
Jan 17, 2008·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Amy L McGuireAlica Goldman
Apr 2, 2008·Nature Reviews. Genetics·Jeantine E LunshofGeorge M Church
Nov 4, 2009·Psychological Bulletin·Jay Belsky, Michael Pluess
Jan 23, 2010·Clinical Genetics·C M Condit
Jun 16, 2010·Journal of Child Psychology and Psychiatry, and Allied Disciplines·Eamon McCroryEssi Viding
Jul 26, 2011·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Amy L McGuireSusan G Hilsenbeck
Jul 27, 2011·The New England Journal of Medicine·Ezekiel J Emanuel, Jerry Menikoff
Mar 1, 2012·Genome Medicine·Timothy CaulfieldYann Joly
Jan 29, 2013·Prevention Science : the Official Journal of the Society for Prevention Research·Celia B Fisher, Erika L Harrington McCarthy
Mar 15, 2013·Journal of Empirical Research on Human Research Ethics : JERHRE·Robert L Klitzman
Jul 28, 2013·Neuroscience and Biobehavioral Reviews·Laura Mandelli, Alessandro Serretti
Mar 13, 2014·Pediatrics·Matthew D BursteinChing C Lau
May 13, 2014·American Journal of Human Genetics·Gail P JarvikWylie Burke
Jun 13, 2014·The Hastings Center Report·Paul S AppelbaumWendy K Chung
Jun 21, 2014·Journal of Community Genetics·Carla L StorrNicholas Ialongo
Sep 30, 2014·Translational Behavioral Medicine·Robert M KaplanPatricia L Mabry
Oct 8, 2014·Proceedings of the National Academy of Sciences of the United States of America·Eva KrapohlRobert Plomin
Apr 18, 2015·Bulletin of the World Health Organization·Nguyen Thanh TamJuntra Karbwang
Jul 24, 2015·Scientific Reports·Kaili RimfeldRobert Plomin
Aug 26, 2015·The American Journal of Bioethics : AJOB·Christine GradyDavid Wendler
Aug 26, 2015·The American Journal of Bioethics : AJOB·Jessica Bardill, Nanibaa' A Garrison
Jan 26, 2016·Wiley Interdisciplinary Reviews. Cognitive Science·Rick O Gilmore
Mar 26, 2016·The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine·Cynthia C KongSuzanne M Vercauteren
May 26, 2016·European Journal of Human Genetics : EJHG·Mats G HanssonSimon Woods
Sep 23, 2016·Prevention Science : the Official Journal of the Society for Prevention Research·Steven R H BeachRobert A Philibert
Nov 7, 2016·Prevention Science : the Official Journal of the Society for Prevention Research·Yao ZhengUNKNOWN Conduct Problems Prevention Research Group
Jan 20, 2017·The New England Journal of Medicine·Jerry MenikoffIvor Pritchard
Feb 12, 2017·Prevention Science : the Official Journal of the Society for Prevention Research·Michael A RussellDavid J Vandenbergh
Mar 18, 2017·Prevention Science : the Official Journal of the Society for Prevention Research·Andrea L GlennLixin Qu
May 4, 2017·Health Affairs·Barbara E BiererHolly Fernandez Lynch
May 18, 2017·The New England Journal of Medicine·Christine Grady

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Citations

Jan 1, 2020·Sexuality Research & Social Policy : Journal of NSRC : SR & SP·Margaret MatsonBrian Mustanski
Aug 23, 2020·Nursing·Rebecca Kronk, Kimberly Subasic
Jul 14, 2020·American Journal of Law & Medicine·Colleen Conboy
Dec 22, 2020·Global Bioethics = Problemi Di Bioetica·Janet Seeley, Michael Parker
Aug 11, 2020·Journal of Clinical Orthopaedics and Trauma·Mohd Javaid, Abid Haleem
May 20, 2021·BMC Medical Ethics·Minerva C Rivas VelardeSamia Hurst-Majno
Jul 10, 2021·Western Journal of Nursing Research·Elizabeth E UmberfieldMarcelline R Harris
Aug 25, 2021·Nature Human Behaviour·Elizabeth Bromley, Dmitry Khodyakov

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Methods Mentioned

BETA
genotyping

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