Through the ethics of responsibility: privacy and the right to research.

Abstract

The conduct of prospective studies on large numbers and with the support of banks of biological samples has been strongly influenced by the increasingly restrictive evolution of laws and regulations enacted to protect the privacy of study participants, often with significant repercussions in terms of delayed achievement of results and increased consumption of human and financial resources. A brief summary of the effects of this evolution on Italian studies in recent decades is reported, along with a reflection on possible solutions.