Direct to consumer genetic testing

The objective of this ETAG-project, coordinated by ITAS and a cooperation between ITAS, TAB and viWTA, is to explore the use of direct to consumer genetic testing. It investigates the offer of genetic testing via internet, the possible problems arising and (dis)advantages of direct genetic testing and the arguments used by different stakeholders. This project intends to come to recommendations and policy options for fostering an ethically and medically reasonable offering of genetic testing to consumers.

The project will lead to a comprehensive overview on the technical, medical, psychological, sociological and juridical aspects of direct to consumer genetic testing. It investigates the possible dangers, and (dis)advantages of direct genetic testing and the arguments used.
The project will start with a literature study that covers ongoing research on free available tests as well as studies on the current medical practice of genetic testing and counselling. This includes an overview of the discussion on medical benefits and ethical and social problems connected to a wide spread use of new options for predictive genetic testing as well as on criteria developed by different actors for “good use” of genetic testing.

So far no systematic research on the availability of genetic testing has been carried out. Thus no reliable data and only “anecdotic” knowledge based on single examples of direct-to-consumer offers of genetic testing is available. The study will try to provide a more systematic insight into the current state of direct-to-consumer genetic testing. This includes the collection of data regarding the number of offers available, information on the quality of these offers in terms of analytical and clinical validity of test results, as well as indicators regarding the quality of genetic counselling to support the individual consumer for decisions on whether or not to make use of genetic testing as well as on the meaning of test results for his further life course. In order to explore these issues an internet survey to identify direct-to-consumer genetic testing offers will be carried out and results will be documented.

In addition to this activity interviews with experts and stakeholders will be carried out in order to get direct information on offers currently available as well as different points of view with regard to the medical, ethical and social evaluation of direct-to-consumer genetic testing. An expert meeting will be organised to discuss the results of he internet survey as well as possible options for political intervention with the aim of fostering medical practice of genetic testing that comply with to medical, legal and ethical standards.
The project’s results should provide more knowledge for national governments as well as the European Union to recommend measures to control the risks of using genetic products that proliferate through the internet and can endanger health of individuals and could mean a threat to health systems as such. Results of the survey as well as policy recommendations for national and international regulation to avoid misuse of free available genetic tests will be discussed with invited experts as well as policy makers at a workshop at the European Parliament.