Short literature notices

نویسندگان

  • M Häyry
  • R Chadwick
  • A Arnason
چکیده

Human genetic databases (HGDs) are collections of samples and data from large numbers of citizens that are being established in order to study interactions between genes and the environment and promise new insights for diseases and their treatments. The involvement of commercial companies and the risks to confidentiality of data and samples stored in HGDs have stirred considerable debate. Iceland, Estonia, Sweden and the UK were among the first European countries to plan population-wide HGDs. Human Genetic Databases (ELSAGEN) in these four countries. The book provides an overview about the results of the various parts of this research. After a general reflection on American principles and European values, the first part summarises surveys of the public regarding concerns related to genetic databases. This is followed by a comparative analysis of the legal frameworks regulating HGDs in the four countries. Chapters on ''ethical ques-tions'' and ''political considerations'' conclude the work. Through the glasses of the public and the ELSAGEN team of these 4 countries, the wider European and international stakes are regularly targeted. Are countries ''participating in an international 'gene race''' (Estonian newspaper, quoted p. 79 by P. Tammpuu)? Is a HGD ''responsible biotechnology'' (R. Kattel, p. 239)? Is the term ''global public good'' appropriate for HGDs, or are they mainly increasing the risk for indigenous people to be exploited (S. Wilson and R. Chadwick, p. 158)? Should HGD-legislation respond to concerns of the public or should it rather incorporate a more abstract viewpoint of ''European justice'' (M. Häyry and T. Takala, p. 256)? The book is a very rich source to learn more about sociological, legal and ethical issues concerning the HGDs in the four countries. It is interesting to read that Icelanders, Estonians and Swedes seem to trust more in genetic science than the UK population. Since the methodologies used seemed to have been considerably different in the four countries, a more detailed description of the questionnaires used would have been helpful to understand such comparisons. The book mirrors perhaps best the debate in that it oscillates considerably between optimism and pessimism. G. Arnason believes that the impact of HGDs is often exaggerated. ''Science and medicine will also do very well without them'' (p. 235). The legal analysis confirms that ''governance structures for population genetic databases are not uniform or harmonious across Europe'' (J. Kaye, p. 141). This demonstrates a ''pressing need for governance reform, particularly visa `-vis biosamples'' …

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عنوان ژورنال:
  • Medicine, Health Care, and Philosophy

دوره 11  شماره 

صفحات  -

تاریخ انتشار 2008