This open access book presents an ethical approach to utilizing personal medical data. It
features essays that combine academic argument with practical application of ethical
principles. 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.
