The repercussions of genetic testing for multifactorial diseases

Predictive value of testing for multiple genetic variants in multifactorial diseases: implications for the discourse on ethical, legal and societal issues

RESEARCH QUESTION
Which psychological, ethical, legal and societal issues are relevant in multiple genetic testing for multifactorial diseases?

Duration: November 2008 - present

SUMMARY
Consumers nowadays have direct access to genetic tests, including those for diseases which involve more than one gene. Numerous commercial firms claim that they can use these to predict the chances of contracting multifactorial diseases. The world of science takes a highly critical view of such tests, however, primarily due to the lack of preliminary and aftercare and their limited clinical relevance. 

Given that the availability of genetic tests appears to be increasing, while further expansion of the testing possibilities is expected, the researchers involved this project are attempting to chart the ethical, legal and social implications of the availability of and subjection to these types of tests. The researchers are particularly interested in identifying the effects of the various properties of such tests. Does the predictive quality of the test, for instance, make a difference? And does it matter whether users submit to an unspecified test (for various diseases simultaneously) or are interested in one particular disease? 

To this end, a number of experts, varying from geneticists and psychologists to ethicists and medical law practitioners, were interviewed. The analysis of the ensuing effects is subsequently presented to the experts again, and they are given the opportunity to respond and to make subtle distinctions if they wish.

The study is to ultimately produce a reference work for policymakers, which may be used – now that genomics is making an increasing impression on society – to hold an effective debate on the ethical and social implications of the availability of genetic tests for multifactorial diseases.