Biobanks: too long to wait for consent (original) (raw)
Related papers
2007
Keywords: Human Genetic Data Banks, Population Biobanks, Disease–Specific Banks, Consent, Confidentiality, Privacy, Duty to Warn, Access to Samples and Data, Genetic Discrimination, Commercialization, Benefit Sharing, Public Benefit, Ownership, Property, ...
American principles, European values and the mezzanine rules of ethical genetic databanking
European Perspectives, 2007
The Medical Biobank of Umeå in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank were planned to contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analysed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases. The research presented in this book was conducted within the project 'Ethical, Legal and Social Aspects of Human Genetic Databases: A European Comparison', funded by the European Commission's 5th Framework Programme (QLG6-CT-2001-00062).
DNA databanks and consent: a suggested policy option involving an authorization model
BMC medical ethics, 2003
Background: Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material.