Literature DB >> 20588076

Myths, misconceptions and myopia: searching for clarity in the debate about the regulation of consumer genetics.

S Hogarth1.   

Abstract

The new wave of companies offering genome scans direct-to-consumer (DTC) has prompted commentary from scientists, clinicians, bioethicists and those interested in the ethical, legal and social issues arising from genomics. It has thus brought a far wider range of actors into a longstanding debate about the regulation of genetic tests. However, some of the recent discussion is characterised by misunderstanding of the regulatory landscape, a failure to grasp the lessons of the past and lack of clarity of thought. In this commentary I challenge a series of myths and misconceptions which plague current academic and policy discussion: the conflation of regulation and proscription; the failure to recognise that DTC companies are gatekeepers; the assumption that requiring a medical intermediary for testing is paternalistic; the belief that online services cannot be regulated; the presumption that we must avoid genetic exceptionalism; the idea that policy is lagging behind science or that it is too soon to act; and finally, the view that DTC genetics is a reality we have to adapt to.

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Year:  2010        PMID: 20588076      PMCID: PMC2914358          DOI: 10.1159/000313330

Source DB:  PubMed          Journal:  Public Health Genomics        ISSN: 1662-4246            Impact factor:   2.000


  4 in total

Review 1.  The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues.

Authors:  Stuart Hogarth; Gail Javitt; David Melzer
Journal:  Annu Rev Genomics Hum Genet       Date:  2008       Impact factor: 8.929

2.  A pragmatic consideration of ethical issues relating to personal genomics.

Authors:  Andro R Hsu; Joanna L Mountain; Anne Wojcicki; Linda Avey
Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

3.  Social networkers' attitudes toward direct-to-consumer personal genome testing.

Authors:  Amy L McGuire; Christina M Diaz; Tao Wang; Susan G Hilsenbeck
Journal:  Am J Bioeth       Date:  2009       Impact factor: 11.229

Review 4.  Statement on use of apolipoprotein E testing for Alzheimer disease. American College of Medical Genetics/American Society of Human Genetics Working Group on ApoE and Alzheimer disease.

Authors: 
Journal:  JAMA       Date:  1995 Nov 22-29       Impact factor: 56.272

  4 in total
  5 in total

1.  Understanding FDA regulation of DTC genetic tests within the context of administrative law.

Authors:  Jennifer K Wagner
Journal:  Am J Hum Genet       Date:  2010-10-08       Impact factor: 11.025

2.  Captious certainties: makings, meanings and misreadings of consumer-oriented genetic testing.

Authors:  Norbert W Paul; Mita Banerjee; Susanne Michl
Journal:  J Community Genet       Date:  2013-11-08

3.  Genetics in the 21st Century: Implications for patients, consumers and citizens.

Authors:  Jonathan Roberts; Anna Middleton
Journal:  F1000Res       Date:  2017-11-17

4.  State of play in direct-to-consumer genetic testing for lifestyle-related diseases: market, marketing content, user experiences and regulation.

Authors:  Paula Saukko
Journal:  Proc Nutr Soc       Date:  2013-02       Impact factor: 6.297

Review 5.  Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.

Authors:  Loredana Covolo; Sara Rubinelli; Elisabetta Ceretti; Umberto Gelatti
Journal:  J Med Internet Res       Date:  2015-12-14       Impact factor: 5.428

  5 in total

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