Feedback

Main principles at stake

The main considerations in the discussion about feedback are the right not to know, the duty of confidentiality and the duty of care. The central question is whether the operator of a genetic database has a duty to inform the participants or third parties about findings of research conducted on data deriving from this database. One must not forget that such research may be carried out many years after a research subject has decided to take part in the population-based genetic project. Living conditions, attitudes towards life, health, social and family status and other aspects which may have had an impact on a person's decision to know or not to know his/her genetic data may have changed significantly, so that the decision which seemed to be right for a research subject five years ago may not seem right in the light of altered circumstances. The question is even more complex in cases where a project has not been designed as a pure research undertaking (the UK Biobank) but also involves elements of a clinical relationship (the Estonian Genome Project) due to additional duties arising from this relationship.

Right not to know

Among the above-mentioned three principles, the right not to know is probably the most modern one given the fact that the roots of international recognition of confidentiality and duty of care can be traced back to the Hippocratic Oath.