by Jenny Krutzinna (Editor), Luciano Floridi (Editor)
The contributors are experts in ethics and law. They address the
challenges in the re-use of medical data of the deceased on a voluntary
basis. This pioneering study looks at the many factors involved when
individuals and organizations wish to share information for research,
policy-making, and humanitarian purposes.
Today, it is easy to
donate blood or even organs, but it is virtually impossible to donate
one’s own medical data. This is seen as ethically unacceptable. Yet,
data donation can greatly benefit the welfare of our societies. This
collection provides timely interdisciplinary research on biomedical big
data. Topics include the ethics of data donation, the legal and
regulatory challenges, and the current and future collaborations.
Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes.
