An Ethical Code for Posthumous Medical Data Donation

Abstract

This chapter follows the argument that personal medical data should be made available for scientific research by enabling and encouraging individuals to donate their medical records after death, provided that this can be done safely and ethically. While medical donation schemes with dedicated regulatory and ethical frameworks for blood, organ or tissue donations are already in place, no such ethical guidance currently exists with regard to personal medical data. In addressing this gap, this chapter presents the first ethical code for posthumous medical data donation (PMDD). It is based on five foundational principles and seeks to inform and guide the implementation of an effective and ethical PMDD scheme by addressing the key risks associated with the utilisation of personal health data for the promotion of the common good.