... Anderson, ‘In
Search of the Holy Grail: Media Discourse and the New Human Genetics’, New
Genetics and Society 21 (
2002), pp. 32 7 33 7; Alan Petersen, ‘Biofantasies: Genetics and
Medicine in the ... 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...
... followed the US tradition,
have implemented the Directive of the European Parliament and the
Council of Europe on the protection of individuals with regard to the
processing of personal data and on the ... Autonomy – The Principles of American
Biomedical Ethics , Journal of Medical Ethics 21 (
1995), pp. 33 2 33 8; Tuija Takala,
‘What is Wrong with Global...
... 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...
... Protection and Processing of Personal Data
holds similar provisions, stemming from article 8, paragraph 3 of the
EU Data Protection Directive, and articles 33 and 34 of the preamble
to the Directive. These ... 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...
... descriptions of DNA.
30
Explanatory Report to the Convention for the Protection of Human Rights and Dignity
of the Human Being with Regard to the Application of Biology and Medicine:
Convention on Human ... (e.g.
SOU
2004:20 Genetics, Integrity and Ethics, pp. 34 3 35 2).
Third parties’ interests in population genetic databases 117
15 Governance of popu...
... historical reasons.
3
Finally, at a deeper level there are
different understandings of ethics and the appropriate role and resourcing
of research, and indeed of the concept of global public goods ... manner.
20
The UNESCO Universal Declaration on the
Human Genome and Human Rights has recognized the fundamental
unity of humankind manifested in our sharing o...
... private,
whether 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.
194 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 pr...
... 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 ... who understands the
purpose and nature of the study, what participation in the study requires
the person to do and to risk, and what benefits are intend...
... 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, Ice...