A Kodak moment? The effects of consumer
genetics on medicine and society
Oslo, August 9
A seminar session during the 33rd European conference on philosophy of medicine and health care: PHILOSOPHY AND ETHICS AT THE EDGE OF MEDICINE, Oslo 7.–10. August 2019
In 2017, a
direct-to-consumer (DTC) genetic test was one of the top 5 best-selling
products on Amazon.com during the Black Friday weekend. Genetic tests to learn
about ancestry have become particularly popular. While sales are peaking, some unexpected
effects of DTC genetic testing are beginning to surface. The biobanks of DTC companies
have been accessed by the police on several occasions to solve cold cases. Anonymous
sperm and egg donors have been found and contacted by their biological offspring.
Children have discovered that their father is not their biological father.
DTC genetic tests also provide information about health. In the US, DTC genetic tests for Alzheimer’s disease, heritable cancers and pharmacogenetics have been available since 2017 despite their controversial analytic and clinical validity. Broad use of such tests may affect the way we, as a society, think about health, disease, and responsibility for health. It may also create new demands on health care systems, clinicians, and patients.
The regulations governing DTC genetic tests remain incomplete. In the US, DTC genetic tests were first introduced in the US market in 1996 partly due to a loophole in the legislation. In the EU, the IVD (In Vitro Diagnostics) directive regulates medical tests. However, in most European countries, genetic tests sold online fall outside of the scope of the legislation. In the Nordic countries, the debate on regulation is scarce and leaves many legal, ethical, medical, and philosophical questions unresolved.
This seminar will focus on main ethical questions raised by the use of DTC genetic tests:
- How does the use of DTC genetic tests affect our understanding of health and disease?
- What will the impact of DTC genetic tests be on the boundaries between established medical norms and values such as curiosity and the right to know?
- Are DTC tests a useful supplement to health care systems or an additional strain on already scarce resources?
- How will DTC genetic tests affect relationships between the state, individuals, and the public and the private sector?
- Is it possible and desirable to regulate or ban DTC genetic tests?