Article

Journal of Business Ethics

, Volume 77, Issue 1, pp 17-31

First online:

The Ethical Challenges of Direct-to-Consumer Genetic Testing

  • Cheryl BergAffiliated withInstitute for Public Health Genetics, University of Washington School of Public Health and Community MedicineDepartment of Medicine, Gastroenterology, University of Washington Medical Center Email author 
  • , Kelly Fryer-EdwardsAffiliated withInstitute for Public Health Genetics, University of Washington School of Public Health and Community MedicineDepartment of Medical History and Ethics, University of Washington School of Medicine

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Abstract

Genetic testing is currently subject to little oversight, despite the significant ethical issues involved. Repeated recommendations for increased regulation of the genetic testing market have led to little progress in the policy arena. A 2005 Internet search identified 13 websites offering health-related genetic testing for direct purchase by the consumer. Further examination of these sites showed that overall, biotech companies are not providing enough information for consumers to make well-informed decisions; they are not consistently offering genetic counseling services; and some sites even offer tests with little evidence of clinical value. This article aims to raise company and consumer awareness about the ethical concerns surrounding the direct-to-consumer marketing of health-related genetic tests. It also suggests ways that biotech companies can bring their services to the public in an ethically responsible manner, without increased regulatory oversight.

Keywords

direct-to-consumer marketing direct-to-consumer sales DNA test genetic test Internet marketing ethics