Genetic information plays an increasingly prominent role in society. Think, for example, of testing for genetic disorders, identifying crime suspects, or discovering your ancestry with a commercial DNA test. In various societal contexts, this raises different ethical questions. These questions become even more complex as data moves from one context to another. What if, for example, the police search a commercial DNA database to track down a suspect?

I did my PhD research at the Department of Philosophy at VU Amsterdam. The first part of the research focused on the ethics of tracking down crime suspects using non-forensic DNA databases, such as medical biobanks in hospitals and commercial DNA platforms.

Complex issues

A bioethical approach, focused on individual autonomy and privacy, proved too limited to address these complex issues. Genetic data is, by its nature, shared data: we share half of our DNA with our parents, children, brothers or sisters, and smaller portions with other close and distant relatives. If one person gives permission to share their genetic data, data about others will inevitably be revealed as well.