Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project

Journal of Medical Ethics
Sandi DheensaBobbie Farsides

Abstract

Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project (100kGP) is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research-including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional stakeholders involved in 100kGP, we investigate the ethical issues raised by this project's hybrid nature. While some interviewees thought the hybrid nature of 100kGP was its vanguard, interviewees identified several tensions around hybrid practice: how to decide who should be able to participate; how to determine whether offering results might unduly influence participation into wide-ranging but often as yet unknown research and how to ensure that patients/families do not develop false expectations about receiving results. These areas require further debate as 100kGP moves into routine healthcare in the form of the national genomic medicine service. To address the tensions identified, we expl...Continue Reading

References

Feb 28, 2007·Mental Retardation and Developmental Disabilities Research Reviews·Steven F WarrenPaul J Yoder
Jul 7, 2007·BMJ : British Medical Journal·Louise RobinsonYvonne Carter
Jun 25, 2008·International Journal of STD & AIDS·Sivapatham ShivasankarRatna Ekanayaka
Apr 22, 2011·Sociology of Health & Illness·Richard Tutton, Barbara Prainsack
Aug 31, 2013·Science·Xiushan LiJuping Zeng
Aug 31, 2013·Science·C G van ElM C Cornel
Jan 27, 2015·Journal of Medical Ethics·Pam CarterMary Dixon-Woods
Feb 26, 2015·The New England Journal of Medicine·Christine Grady
Mar 13, 2016·Life Sciences, Society and Policy·Raymond G De VriesScott Y H Kim
Dec 1, 2014·The HUGO Journal·Bartha Maria Knoppers
Aug 27, 2016·Human Fertility : Journal of the British Fertility Society·Susanna GrahamSusan Golombok
Nov 3, 2016·Occupational Therapy in Health Care·Preethy S SamuelPeter A Lichtenberg
Apr 27, 2017·European Journal of Human Genetics : EJHG·Harriet J A TeareM Kassim Javaid
Jun 26, 2017·Archives of Disease in Childhood·Claire LemerSally C Davies
Nov 1, 2017·Medicine, Health Care, and Philosophy·Gabrielle Natalie Samuel, Bobbie Farsides
Feb 21, 2018·Annals of Oncology : Official Journal of the European Society for Medical Oncology·C Turnbull

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Citations

Jan 11, 2020·European Journal of Human Genetics : EJHG·Lisa M BallardAnneke M Lucassen
Jul 16, 2020·Public Understanding of Science·Lamiece HassanMary Patricia Tully
Oct 12, 2019·Expert Review of Molecular Diagnostics·Rachel Horton, Anneke Lucassen
Mar 28, 2019·Frontiers in Genetics·Gabrielle WhewayUNKNOWN Genomics England Research Consortium
Nov 24, 2020·European Journal of Human Genetics : EJHG·Guido de WertUNKNOWN European Society of Human Genetics
Jan 9, 2021·Trends in Biotechnology·Diewertje HoutmanSam R Riedijk
Jan 19, 2021·European Journal of Human Genetics : EJHG·Marie GailleUNKNOWN UK-FR GENE (Genetics and Ethics Network) Consortia
Apr 7, 2021·Personalized Medicine·Danya F VearsMadeleine J Murtagh
Jul 3, 2021·Journal of Personalized Medicine·Roel H P WoutersAnnelien L Bredenoord

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