Arnold Sauter

Direct to consumer genetic testing: insights from an internet scan

A survey of 38 internet platforms of companies offering genetic testing services direct to consumers was carried out in summer 2008. The internet survey supported the notion held by many experts and discussed by policy advisory bodies that (1) many direct-to-consumer genetic testing (DCGT) offers do not meet a minimum set of quality criteria that can be regarded to be necessary for ensuring adequate information and protection of customers against misleading interpretation of the need for as well as the possible consequences of genetic testing; (2) most DCGT offers fail to provide proper information on the scientific evidence behind genetic testing services offered to customers (clinical validity and utility); (3) many of the companies offering genetic testing services via the internet do not include genetic counseling at all in their services. Only a few urge customers to involve an expert before purchasing a gene test, and “counseling” in most cases only is provided as written information via mail or via web-log.

The Future Panel on Public Health Genomics — Lessons Learned and Future Perspectives

Krom et al. give an in-depth account of a methodological experiment carried out in the PACITA project, namely the application in a cross-European context of the Future Panel method. Focusing on the complex issue of genomics and its potential use in public health care, parliamentarians from different countries were gathered to learn about and debate this far-reaching field of research in order to create a foundation for proactive policy formulation. The authors analyse and evaluate the project setup and argue that while further development and institutional is necessary to make similar future projects reach their full potential, the project nevertheless exemplifies the practicability and value of applying previously nationally contained TA methods in a cross-European setting.