ESHG PPPC Comments on postmortem use of genetic data for research purposes
1st February 2020
A large number of biobanks are constituted worldwide for many different research purposes. The number of stored samples is increasing, representing a significant proportion of the population in some countries. There is a time lag between sample collection and any potential analysis. Some biobanks aim to collect samples of individuals affected with specific disorders, which can be associated with early death. It is therefore evident that a proportion of samples in biobanks will have been collected from individuals who will be deceased or whose circumstances have changed at the time potential results from analyses are generated. The researchers or biobanks curators are not informed of the death of participants in the vast majority of (if not all) cases. Therefore, researchers proceed with the contribution of those samples without making a distinction between “still alive” and “deceased”. The continuing use of samples postmortem is more implicit than clearly expressed in the current regulations.
In parallel, there are active discussions regarding the return of ‘results’ from research analyses to research participants, either alive or after their death [1, 2]. These may include genetic information, which may have relevance to family members and maybe shared. Bak et al.  raise the not trivial issue pertaining the potential disclosure of research results to relatives after the research participant’s death.