14 December 2018

Challenges Informed consent in whole genome sequencing

Ida Helene Asmussen and Katharina Ó Cathaoir publish new article in the European Journal of Health Law.

Developments within biotechnology are of a pace and complexity that challenge the predictability at the foundation of legislation, i.e. the possibility for politicians to foresee pitfalls and hazards, and design legislation accordingly. The lack of predictability is not only a challenge for the legislature, but also for the citizen, who is to consent to the new biotech services offered by the health authorities. How can one give informed consent to a measure, the consequences of which is hard to predict? Does the uncertainty and lack of predictability mean that paternalism has slipped back in as a ‘self-selected’ responsiveness to the rhetoric of the health regime? Recently, Denmark has taken another step in the direction of voiding autonomy of actual value by rendering genetic analysis contingent on agreeing that the resulting data may be stored in the recently established National Genome Centre, and reused for research unless the patient opts out.

The article is available here

Ida Helene Asmussen

Katharina Ó Cathaoir