... the Protection of Human Rights and Dignity of the Human
Being with Regard to the Application of Biology and Medicine: Convention on Human
Rights and Biomedicine, Oviedo, 4 April 1997, ETS 1 64.
106 ... evaluate and monitor their
current usage.
5
Definitions of genetic databases can be found in the laws of Iceland,
Sweden and Estonia,
6
but these are li...
... original hypothesis was that there must be a clear distinction between
the American and European approaches to the ethics of human genetic
1
The expressions human genetic databanking’ and genetic ... of data for research at the time of
collection. This creates a particular challenge for the ethics of database
research.
Introduction: some lessons of ELSAGE...
... the only possible way of protecting the
interest of privacy in the technology age of cyberspace and genetic
databases.
9
7
Allen, ‘Privacy in American Law’.
8
Council Directive 95 /46 /EC of 24 ... History and Philosophy of Biological and Biomedical Sciences
32 (
2001), pp. 689–7 04.
20 Matti Ha¨yry and Tuija Takala
the basic human rights, and from there in...
... under-
standing of people’s perceptions of privacy and their trust in the guard-
ians of biobanks and the institutions setting them up and regulating them.
The UK team felt that the findings of this ... reflect-
ing the final outcome of the project in terms of actual participation rates,
4
these figures reveal rather low actual interest in such issues on the...
... far
12
Constitution of the Republic of Iceland 1 944 (Stjo´rnarskra´ lydveldisins I
´
slands 33/1 944 )
with the rule of privacy in art. 71, establishing the right to ‘immunity of privacy, home,
and family ... Protection of Human Rights and Dignity of the Human
Being with Regard to the Application of Biology and Medicine: Convention on Human
Rights and Bi...
... there are
different understandings of ethics and the appropriate role and resourcing
of research, and indeed of the concept of global public goods itself.
Our argument proceeds by outlining the ... manner.
20
The UNESCO Universal Declaration on the
Human Genome and Human Rights has recognized the fundamental
unity of humankind manifested in our sharing of...
... it is the best use of money), governance of the project, aims of the
project, scientific value of the project (reliability of the data) and the
perception of the public.
1 94 Margit Sutrop
not ... possibilities of betrayal. The
lack of critical analysis of possible risks and benefits may bring a serious
backlash in the future. The promoters’ limitl...
... not only
the Human Genome Project, but also population-based human genetic
databases. One of the main justifications for human genetic databases is
indeed the possibility of producing the knowledge ... at a theoretical level – and whether the latter is
even possible.
4. the ways in which the development of and operation of biobanks give
rise to question...
... respect the views of the many rather than the views of the few. The
point of social studies is, within this model, to inform the authorities of the
direction of the majority opinion. The second ... large-scale human genetic databases? And secondly, in the light
of the research of the legal team,
3
how well have the authorities of
Estonia, Icela...
... Bondeson
and Jones, The Ethics of Managed Care, 55– 74
Salter, B., and M. Jones, ‘Regulating Human Genetics: The Changing Politic of
Biotechnology Governance in the European Union’, Health, Risk and ... Journal of Medical Ethics 24
(1998), 81–85
European Values in Bioethics: Why, What, and How to be Used?’, Theoretical
Medicine and Bioethics 24 (2003), 199...