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Aims and Objectives

The Genetic Database project has developed its objectives around the following specific strands:

Conceptual Strand

This strand focuses on analysing complexities and contradictions of ethical and philosophical principles underlying governing and regulatory frameworks and the application of these principles to different kinds of databases. Some of these principles include for example 'global public goods', benefits sharing, notions of justice, complexities of individual consent and community consent. More issues are identified for further analysis including balancing principles, conceptions of solidarity and equity and the complexities of drawing a line between research, therapeutic and health applications.

Comparative Strand

This strand focuses on exploring similarities and contrasts between:

  • Typology of databases: This contrasts and compares different types of databases with regard to definition, purpose, maintenance and usage. Perspectives of professionals and public are also explored.
  • Models of governance: To study the global dimensions of models of existing governance and regulatory frameworks in different countries for genetic databases, and how these reflect the culture, societal values and priorities of those countries.
  • Models of ethical oversight: comparison of ethical principles enshrined in different regulatory mechanisms
  • Comparisons with other population based studie for example, HapMap Project and International Complex Trait Consortium
  • Comparative study between Europe and Asia on genetic databases, funded by The British Academy.

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Empirical Strand

The genetic register service

This involves research in collaboration with Dr Tara Clancy and the North West Family Genetic Register Service, located at the St. Mary’s hospital Manchester. This research will focus on the expectations and attitudes of registrant families towards the genetic register service.

Public perceptions of database governance.

As part of the EU funded project on Ethical, Legal and Social Aspects of Human Genetic Databases: A European Comparison (2002-04) Sue Weldon and Mairi Levitt conducted focus groups with members of the public in the UK exploring issues of privacy and trust in relation to databases. As with other open-ended consultation respondents did not confine themselves to areas considered relevant to non-scientists and non-experts. Rather they often considered social, technical and ethical aspects at the same time and had views on the way research priorities are chosen, the types of research that should or should not be pursued, research funding and who stands to benefit from research and subsequent applications (see publications for the research findings). For more information on ELSAGEN visit the ELSAGEN website.

Theoretical Strand

This strand involves raising questions about the statistical validity of databases and interpretations of genetic association studies. A literature review will be undertaken on the statistical issues arising out of association studies, with a view to developing further work on statistical modelling. Some examples of the questions include:

  • Reproducibility/biological evidence to support associations between genes and complex diseases
  • Power of association tests
  • Genetic differences within and between different populations; and in particular the differences in genetic effects for diseases and their responses to drugs, for example.
  • Linking genetic databases with other kinds of databases.

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Page updated: 8 November, 2005