Ethical and legal considerations for pediatric biobank consent: current and future perspectives

Personalized Medicine
Kyle B Brothers, Aaron J Goldenberg

Abstract

Innovations in laboratory and information technologies continue to drive the expansion of pediatric biorepository research, with collections of biosamples and data continuing to grow in scale and scope. In this review, we examine the trajectory of recent developments in ethical and legal scholarship on consent to pediatric biorepository research. We focus, in particular, on issues that are likely to grow in importance in coming years, either because significant controversies remain or because they represent trends that are likely to continue into the future. Of particular interest is the evolving conception of consent as a process, the trend toward increased participant engagement and other challenges likely to raise thorny new issues in this field in the decade ahead.

References

Dec 1, 1981·Controlled Clinical Trials·J M Howard, D DeMets
Aug 29, 2003·Theoretical Medicine and Bioethics·Wilma C RossiRobert M Nelson
Jan 28, 2004·The American Journal of Bioethics : AJOB·Steven Joffe
Jan 28, 2004·The American Journal of Bioethics : AJOB·Jeffrey R Botkin
May 15, 2007·Science·Isaac S KohaneLouis M Kunkel
Aug 24, 2007·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·David E Winickoff
May 27, 2008·Clinical Pharmacology and Therapeutics·D M RodenD R Masys
Nov 14, 2008·American Journal of Medical Genetics. Part a·Catherine A McCartyUNKNOWN Marshfield Clinic PMRP Community Advisory Group
Jul 15, 2009·The Journal of Pediatrics·Aaron J GoldenbergBenjamin S Wilfond
Aug 15, 2009·Science·David GurwitzBartha Maria Knoppers
May 19, 2010·Annual Review of Genomics and Human Genetics·Amy L McGuire, Laura M Beskow
Mar 10, 2011·European Journal of Human Genetics : EJHG·Kristien HensKris Dierickx
Jun 22, 2011·Personalized Medicine·Kyle Bertram Brothers
Jul 6, 2011·Social Science & Medicine·Kieran C O'DohertyDavid E Winickoff
Feb 11, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Benjamin S Wilfond, Douglas S Diekema
Mar 1, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Stephanie M FullertonGail P Jarvik
Jun 21, 2012·European Journal of Human Genetics : EJHG·Kristien HensUNKNOWN PPPC of the European Society of Human Genetics
Apr 27, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Joon-Ho YuMichael J Bamshad
Dec 18, 2013·Science Translational Medicine·Gail E HendersonBryan J Weiner
Jan 1, 2014·The Hastings Center Report·Lynn A Jansen
Feb 22, 2014·Public Health Genomics·K M HaldemanE Reavely
May 8, 2014·European Journal of Human Genetics : EJHG·Jane KayeKaren Melham
Sep 30, 2014·Mayo Clinic Proceedings·Kyle B BrothersEllen W Clayton
Jan 31, 2015·The New England Journal of Medicine·Francis S Collins, Harold Varmus
Feb 12, 2015·Journal of Epidemiology and Community Health·Flavio D'Abramo
Aug 4, 2015·The Journal of Pediatrics·Amanda RushDaniel Catchpoole
Oct 20, 2015·The Journal of Pediatrics·Kyle B BrothersUNKNOWN Pediatrics Workgroup of the Clinical Sequencing Exploratory Research (CSER) Consortium
Nov 20, 2015·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Nanibaa' A GarrisonEllen W Clayton
May 18, 2016·American Journal of Human Genetics·Robert C GreenUNKNOWN CSER Consortium

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Citations

Sep 22, 2019·Ethics & Human Research·Janet E ChilderhoseKyle B Brothers
Apr 22, 2020·Cell and Tissue Banking·Nunzia CannovoPiergiorgio Fedeli
Mar 27, 2021·Journal of Medicine and Life·Svetlana Mykolaivna GramatiukAndriy Ivanovich Popovich
Jul 27, 2021·Frontiers in Medicine·T J Kasperbauer, Colin Halverson

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BETA
blood draw

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