Is there a doctor in the house?
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ORIGINAL ARTICLE
Is there a doctor in the house? The presence of physicians in the direct-to-consumer genetic testing context Heidi Carmen Howard & Pascal Borry
Received: 29 April 2011 / Accepted: 5 August 2011 / Published online: 6 September 2011 # Springer-Verlag 2011
Abstract Over the last couple of years, many commercial companies, the majority of which are based in the USA, have been advertising and offering direct-to-consumer (DTC) genetic testing services outside of the established health care system, and often without any involvement from a health care professional. In the last year, however, a number of DTC genetic testing companies have changed their provision model such that consumers must now contact a health care professional before being able to order the genetic testing service. In discussing the advent of this new model of service provision, this article also reviews the ethical and social issues surrounding DTC genetic testing and addresses the potential motivations for change, some barriers to achieving truly appropriate medical supervision and the present reality of DTC genetic testing for some psychiatric and neurological disorders. Special Issue: Genetics and Democracy H. C. Howard (*) : P. Borry Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium e-mail: [email protected] H. C. Howard Institute of Bio- and Medical Ethics Basel, University of Basel, Missionstrasse 24, CH-4056, Basel, Switzerland P. Borry Department of Medical Humanities, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands P. Borry Department of Clinical Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
Since the advent of these commercial activities, critics have pointed a finger at the lack of medical supervision surrounding these services. The discussion herein, however, reveals how difficult it may be, despite the addition of a physician, to actually achieve adequate medical supervision within the present context of DTC genetic testing. Keywords Direct-to-consumer . Genetic testing . Ethical
Introduction According to a list compiled by the Genetics and Public Policy Centre (USA), there were at least 29 companies, most of which have headquarters in the USA, selling directto-consumer (DTC) genetic tests in May 2010 (Genetics and Public Policy Center 2011). The types of tests sold by these companies include single gene tests, multiple genes tests and genome-wide-testing also known as personal genome scanning, whereby hundreds of thousands to millions of genetic markers (often single nucleotide polymorphisms) are tested throughout the genome. Although the majority of the popular media coverage and much of the academic debates have focussed on companies selling genome-wide-testing services (i.e. from companies such as 23andMe, deCODE and Navigenics), most DTC genetic testing companies, in fact, do not sell this type of testing. Also contr
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