'It's much more grey than black and white': clinical geneticists' views on the oversight of consumer genomics in Europe

Personalized Medicine
Louiza KalokairinouHeidi Howard

Abstract

Aim: Direct-to-consumer (DTC) genetic tests (GT) have created controversy regarding their risks and benefits. In view of recent regulatory developments, this article aims to explore the attitudes of European clinical geneticists toward the oversight of DTC GT. Materials & methods: Fifteen semi-structured interviews were performed with clinical geneticists based in ten European countries. The transcripts were thematically analysized in an iterative process. Results & conclusion: Respondents strongly supported quality standards for DTC GT equal to those applied within the healthcare setting. Despite participants unanimously considering the involvement of healthcare professionals to be important, mandatory medical supervision was controversial. In this regard, promoting education and truth-in-advertising was considered as being key in maintaining a balance between protecting consumers and promoting their autonomy.

References

Sep 5, 2008·Annual Review of Genomics and Human Genetics·Stuart HogarthDavid Melzer
Dec 10, 2009·The American Journal of Bioethics : AJOB·Amy L McGuireSusan G Hilsenbeck
Aug 10, 2010·Annual Review of Genomics and Human Genetics·Colleen M McBrideKimberly A Kaphingst
Aug 26, 2010·European Journal of Human Genetics : EJHG·UNKNOWN European Society of Human Genetics
Oct 27, 2010·PloS One·Lynn F CherkasBarbara Prainsack
Nov 16, 2010·New Genetics and Society·Michelle L McGowanMarcie A Lambrix
Jan 14, 2011·The New England Journal of Medicine·Cinnamon S BlossEric J Topol
Jan 27, 2011·European Journal of Human Genetics : EJHG·Carla G van ElUNKNOWN ESHG Public and Professional Policy Committee
Sep 29, 2011·Clinical Genetics·T N NelsonS Dougan
Nov 24, 2011·Journal of Community Genetics·Heidi Carmen Howard, Pascal Borry
Feb 16, 2012·European Journal of Human Genetics : EJHG·Lesley GoldsmithHeather Skirton
Apr 9, 2013·Genetic Testing and Molecular Biomarkers·Juli Murphy BollingerDavid Kaufman
Sep 24, 2013·Current Genetic Medicine Reports·J Scott Roberts, Jenny Ostergren
May 7, 2014·Journal of Medical Ethics·Effy Vayena
Sep 27, 2014·PloS One·Michelle L McGowanEric T Juengst
Dec 19, 2015·Genetics in Medicine : Official Journal of the American College of Medical Genetics·UNKNOWN ACMG Board of Directors
Jan 29, 2016·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Natalie M BaptistaRobert C Green
Jan 11, 2017·BMC Medical Genomics·Andrew SmartRichard Tutton
Jul 25, 2017·Journal of Medical Genetics·Louiza KalokairinouHeidi Carmen Howard
Aug 24, 2017·European Journal of Human Genetics : EJHG·Lauren BadalatoPascal Borry
Nov 19, 2017·Journal of Community Genetics·L KalokairinouP Borry

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