Ethical and Legal Aspects of Direct-to-consumer Genetic Testing in Europe

Various companies are currently selling genetic tests directly to consumers. The range of direct-to-consumer (DTC) tests available is broad, from preconceptional carrier tests for single-gene disorders to genetic association tests for predisposition to complex, multifactorial diseases. The general objective of this research project is to study ethical, legal and social issues related to DTC genetic testing. The research project will study through an innovative research approach the ethical problems that DTC companies raise in real life. Based on interviews with clinicians that provided genetic counselling to consumers that ordered DTC genetic tests, we will study the impact of DTC genetic testing on clinical genetics services and on individual consumers. Through the analysis of the legal frameworks, we will study the current limitations or absence of barriers on the operation of these companies in Europe. Through this combination of perspectives this research project will make it possible to move beyond the state of the art in the debate on the responsible and effective translation of genome-based knowledge and technologies for the benefit of the individual and population health.status: publishe