Volume 77, Number 1, 17-31, DOI: 10.1007/s10551-006-9298-8

The Ethical Challenges of Direct-to-Consumer Genetic Testing

Cheryl Berg and Kelly Fryer-Edwards

From the issue entitled "Ethical Issues in the Biotechnology Industry"

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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

Submitted for the Special Issue on Ethical Issues in Biotechnology.

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