Community genetics and policy
Interactive scenario study of future developments in community genetics
General practitioners and the public healthcare sector are increasingly faced with the possibilities of genetic testing. In fact, consumers can even order their own genetic tests on the Internet. Genetics is therefore reaching an increasingly large portion of society in what is nowadays referred to as community genetics. While these developments offer opportunities, they also entail risks.
In an attempt to remain abreast of the latest state of affairs, this project carried out an interactive technology assessment. This is a method which is used to analyse technology together with all parties involved at the moment it becomes common property, instead of the previous practice of doing so afterwards. What are the envisaged benefits and drawbacks? And how might we in the community prepare ourselves accordingly? Those involved in the project varied from general practitioners, scientists and patients, to suppliers of genetic tests and representatives of the Netherlands Ministry of Health, Welfare and Sport.
The project commenced by carrying out ‘landscape exploration’. This involved the performance of a literature search and interviews to establish how community genetics fits into the current field of healthcare. Next, scenarios were drawn up for public healthcare, general practitioners and commercial parties, in which the future role of community genetics was predicted. Various workshops were ultimately held in which stakeholders were actively prompted to discuss the aforementioned scenarios, which were charged with all manner of ethical and political dilemmas.
This process also led to the publication of a book titled ‘Genetics, genomics and healthcare’, which serves as a political guide to regulations and legislation pertaining to community genetics, while it also contains the aforementioned scenarios.
Duration: June 2005 - June 2007