Data donation after death: A proposal to prevent the waste of medical research data.

Abstract

What happens to your personal data after you die? Most of the discussion on this topic has focused on whether and how relatives should be given access to the media accounts and music libraries of deceased loved ones (http://www.theguardian.com/money/2012/sep/03/do-you-own-your-digital-content; accessed 30 October 2015). However, an important issue—namely, of posthumous data use in research—has been mostly neglected. When they are alive, many people are willing to be involved in research projects and have their medical records used for medical and epidemiological studies, subject to the relevant safeguards. But few consider what will happen to their medical data after they die. Many will undoubtedly assume that this information will no longer be accessible once they are dead and that confidentiality automatically persists where life does not. Depending on the jurisdiction, these assumptions might be wrong: researchers can in fact access the medical data of deceased patients under certain circumstances as part of ethically approved research projects—for example, if the data is anonymized. However, in most countries, it is much more difficult to use “deceased data” than it is to use data from living individuals, as deceased persons cannot be asked to provide informed consent. We believe that there should be greater transparency regarding the use of medical data after death and that patients and other research participants should be encouraged to donate data after death—just as people donate organs posthumously [1]—as was once suggested in relation to brain researcher's personal data [2]. Data protection is a significant issue in modern society, and most developed countries have sophisticated laws and regulations to safeguard citizens' private and sensitive data from abuse. (Sidebar A). However, in most countries, the focus is predominantly on protecting the data of those who are still alive. This is perhaps understandable, as these citizens have …