The Ethics of Medical Data Donation

Much of the public health system relies on people’s willingness to participate in promoting the common good. Donation (including organ, blood, and tissue) has become a key concept in many areas of medicine, where it is now deeply engrained in everyday clinical practice, as well as in medical research.

Clinical trials, research studies, and physical donation schemes all have dedicated regulatory frameworks to ensure the safe and ethical treatment of people, and to protect people’s interests from undue interference by public or private institutions.

– States, through their health systems, increasingly seek to grow their possibilities to leverage available resources and to “nudge” people into participation. The shift from voluntary, opt-in models to opt-out schemes in organ donations is just one such example, with the introduction of electronic health records (EHRs) being another, Krutzinna explains.

The use of Big Data

The advancement of our medical knowledge and understanding, which is ultimately required to improve population health, relies on the availability of large amounts of information. Medical data, or “Big Data”, is needed to fight complex conditions such as diabetes, Alzheimer’s, and heart disease.

– While discussions on the ethics of medical data use tend to take a negative approach, focusing on what the state as a provider of health services may not do with data that are placed within their trust, the question of data subjects’ preferences is rarely addressed beyond the practical issue of obtaining valid consent. This constitutes an important omission in the ethical debate, Krutzinna argues.

Pioneering book

The open access book “The Ethics of Medical Data Donation” is edited by Jenny Krutzinna together with Luciano Floridi and published by Springer International. It presents an ethical approach to utilising personal medical data, which combines the perspective of individuals with the obligation of the state to facilitate data donation.

The book is the first of its kind to review the many ethical factors involved when individuals and organisations wish to share medical information for research, policy-making, and humanitarian purposes.

It includes 12 chapters by leading international researchers and a proposal for an ethical code for posthumous data donation.

An Ethical Code

Krutzinna has contributed two book chapters on enabling posthumous medical data donation. With Mariarosaria Taddeo and Luciano Floridi (University of Oxford), she has contributed to a proposal for an ethical code in which the authors argue that there is an urgent need to foster medical data donation and provide a dedicated ethical governance framework for a medical data donation scheme.

Jenny Krutzinna is a postdoctoral researcher at the Department, working on the Acceptability project at the Centre for Research on Discretion and Paternalism.