... 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...
... 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...
... 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...
... 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 ... History and Philosophy of Biological and Biomedical Sciences
32 (
2001), pp. 689 70 4.
20 Matti Ha¨yry and Tuija Takala
the basic human rights, and...
... Anderson, ‘In
Search of the Holy Grail: Media Discourse and the New Human Genetics’, New
Genetics and Society 21 (
2002), pp. 3 27 3 37; 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 U...
... Defining human genetic databases
One of the major obstacles to developing a uniform system of regulation is
the lack of an agreed definition of genetic database’ based on an under-
standing of the ... 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 limited...
... 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 ... Rights and Biomedicine, unclassified CM (96) 175 final
(Strasbourg: Council of Europe, Committee of Ministers,
19 97) .
31
Convention on the Protection o...
... 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 questions...
... 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...
... 67, 68–69
privacy 69 70 , 71
trust 67, 69, 70 71
public discourses on genetic databases
73 74 , 86– 87
Estonian Genome Project 73
, 77 78 ,
86– 87
framing and contextualization 78 –80
implications 85–86
major ... Bondeson
and Jones, The Ethics of Managed Care, 55 74
Salter, B., and M. Jones, ‘Regulating Human Genetics: The Changing Politic of
Biotechnology G...