Abstract for presentation at 11th International Congress of Human Genetics

Ethical challenges to direct to consumer gene testing

  • Carol Isaacson Barash, Genetics, Ethics & Policy Consulting, United States
  • There are multiple areas in which direct to consumer gene testing, (with and without physician intermediaries) is available; ancestry testing, sex identification, nutrigenomic, athletic performance, skin and other personal care areas and age management testing. By all indications the market will grow in both type and size. In the context of both evolving local and international regulations and the rowing availability of such tests, ethical questions abound. There is increasing concern about how to ethically balance the competing interests of stakeholders; consumers’ right to know, government’s right to protect and corporate responsibility in ensuring that products and services are used ethically. It is arguable that there is no precedent for the challenges that DTC gene testing represents. The challenges are great, given the convergence of increased health care finance burden on consumers and internet mediated health care delivery and interests in global benefit sharing. This presentation will discuss some of the many issues confronting us on personal, societal and regulatory levels, including how to frame policy questions to make explicit weighted preferences and tradeoffs in order to achieve ethically accepted decision-making. The impact of DTC policy will be long lived and the time to get it right is now.

    Conference Organiser - ICMS Pty Ltd