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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.
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Paperback
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R383
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Discovery Miles 3 100
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