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Genetic information plays an increasingly important role in
ourlives. As a result of the Human Genome Project, knowledge ofthe
genetic basis of various diseases is growing, withimportant
consequences for the role of genetics in clinicalpractice, health
care systems and for society at large. In theclinical setting
genetic testing may result in a better insightinto susceptibility
for inheritable diseases, not only before orafter birth, but also
at later stages in life. Besides prenataltesting and
pre-conceptional testing, predictive testing hasresulted in new
possibilities for the early detection, treatmentand prevention of
inheritable diseases. However, not all inheritable diseases that
can be predicted onthe basis of genetic information can be treated
or cured.Should we offer genetic tests to people for
untreatablediseases? Should we test every individual who wants to
knowhis or her genetic status? Should we inform family membersabout
the results of genetic tests of individuals, even whenthere are no
possibilities for treatment? What, in such cases,is the role of the
"right-not-to-know"? Should we informfamily members when there is
only an increased risk of adisease? This book deals with the
ethical issues of clinicalgenetics, as well as ethical issues that
arise in geneticscreening, the research of populations, and the use
of geneticinformation for access to insurance and the workplace.
Investigations into the interplay of biological and legal
conceptions of life, from government policies on cloning to DNA
profiling by law enforcement. Legal texts have been with us since
the dawn of human history. Beginning in 1953, life too became
textual. The discovery of the structure of DNA made it possible to
represent the basic matter of life with permutations and
combinations of four letters of the alphabet, A, T, C, and G. Since
then, the biological and legal conceptions of life have been in
constant, mutually constitutive interplay-the former focusing on
life's definition, the latter on life's entitlements. Reframing
Rights argues that this period of transformative change in law and
the life sciences should be considered "bioconstitutional."
Reframing Rights explores the evolving relationship of biology,
biotechnology, and law through a series of national and
cross-national case studies. Sheila Jasanoff maps out the
conceptual territory in a substantive editorial introduction, after
which the contributors offer "snapshots" of developments at the
frontiers of biotechnology and the law. Chapters examine such
topics as national cloning and xenotransplant policies; the
politics of stem cell research in Britain, Germany, and Italy; DNA
profiling and DNA databases in criminal law; clinical trials in
India and the United States; the GM crop controversy in Britain;
and precautionary policymaking in the European Union. These cases
demonstrate changes of constitutional significance in the relations
among human bodies, selves, science, and the state.
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