Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective

Journal of Bioethical Inquiry
Lisa Eckstein, Margaret Otlowski

Abstract

In Australia, along with many other countries, limited guidance or other support strategies are currently available to researchers, institutional research ethics committees, and others responsible for making decisions about whether to return genomic findings with potential value to participants or their blood relatives. This lack of guidance results in onerous decision-making burdens-traversing technical, interpretative, and ethical dimensions-as well as uncertainty and inconsistencies for research participants. This article draws on a recent targeted consultation conducted by the Australian National Health and Medical Research Council to put forward strategies for supporting return of finding decision-making. In particular, we propose a pyramid of decision-making support: decision-making guidelines, technical and interpretative assistance, and ethical assistance for intractable "tough" cases. Each step of the pyramid involves an increasing level of regulatory involvement and applies to a smaller subsection of genomic research findings. Implementation of such strategies would facilitate a growing evidence base for return of finding decisions, thereby easing the financial, time, and moral burdens currently placed on researchers ...Continue Reading

References

Oct 2, 2003·The Modern Law Review·J Black
Apr 7, 2005·Monash Bioethics Review·Susan Dodds
Nov 7, 2006·The American Journal of Bioethics : AJOB·Vardit Ravitsky, Benjamin S Wilfond
Nov 7, 2006·The American Journal of Bioethics : AJOB·Laura M Beskow
Jun 13, 2008·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Henry S Richardson
Sep 5, 2008·Annual Review of Genomics and Human Genetics·Stuart HogarthDavid Melzer
Oct 21, 2009·Monash Bioethics Review·Lynn GillamDoreen Rosenthal
Jul 2, 2010·Science Translational Medicine·Laura M Beskow, Wylie Burke
Dec 31, 2010·Trends in Genetics : TIG·Annelien L BredenoordJohannes J M van Delden
May 12, 2011·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Jonathan S BergJames P Evans
Mar 1, 2012·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Stephanie M FullertonGail P Jarvik
Aug 2, 2012·Journal of Empirical Research on Human Research Ethics : JERHRE·Marilys GuilleminAnnie Bolitho
Apr 27, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Joon-Ho YuMichael J Bamshad
May 17, 2013·European Journal of Human Genetics : EJHG·Carla G van ElUNKNOWN ESHG Public and Professional Policy Committee
Jun 22, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Robert C GreenUNKNOWN American College of Medical Genetics and Genomics
Mar 13, 2014·JAMA : the Journal of the American Medical Association·Frederick E DeweyThomas Quertermous
Jul 22, 2014·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Lisa EcksteinBenjamin E Berkman
Oct 31, 2014·Genetics in Medicine : Official Journal of the American College of Medical Genetics·UNKNOWN ACMG Board of Directors
Dec 17, 2014·Personalized Medicine·Benjamin E BerkmanLisa Eckstein
Mar 12, 2015·Clinical and Translational Science·Mildred K ChoBenjamin S Wilfond
Nov 20, 2015·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Catherine GliwaBenjamin E Berkman
Mar 5, 2016·American Journal of Human Genetics·Andrew J DarnellLeslie G Biesecker

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Citations

Oct 21, 2018·Journal of Bioethical Inquiry·Michael A Ashby, Bronwen Morrell

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