Genetic Privacy

UK

• British Society for Human Genetics - An independent body established to represent UK human genetic professionals.

• Department of Health: Genetics - This contains some interesting developments on progress made in the field of genetics by the Department of Health.

• Genetics Forum - Founded in 1989, it was established 'by a group of scientists, lawyers and advocates from the animal welfare, environmental and consumer movements concerned about the long-term impact of rapid developments in the genetic sciences.'

• Public Health Genetics Unit - Funded by the NHS, it provides news and information on genetics, its development and impact on public health and the prevention of disease. The website is currently hosted by the University of Cambridge School of Clinical Medicine.

• Science & Technology - Fourth Report - Published in March 2001, the House of Lords Inquiry was set up to explore the 'opportunities and challenges arising from the use of human genetic databases.'

• The Wellcome Trust Sanger Centre - Funded by the Wellcome Trust, it was established to 'analyse and understand genomes.' Its work also includes the mapping of the human genome.

• American Society of Human Genetics - A body representing the interests of the profession in human genetics.

• Geneforum.org - As its title suggests, it 'seeks to promote dialogue and educate people about genome science and its impact on their lives.' A monthly electronic newsletter entitled The DNA Dispatch is also produced by Geneforum.

• Gene Media Forum - A forum to discuss issues concerning genome research and its impact on science and society.  The website has recently been revamped.

• Genetic Privacy Act & Commentary - Produced by the Health Law Department at Boston University School of Public Health, it was the 'Final Report of a project entitled "Guidelines for Protecting Privacy of Information Stored in Genetic Data Banks". 

• Genetic Information Nondiscrimination Act 2003 - Passed by the Senate, the Act prohibits genetic discrimination  for employment  and insurance purposes (pdf).

• Human Genome Project Information - Established in 1990, the aims of the project includes the 'identification of approximately 30,000 human DNA genes and determining the sequences of the 3 billion chemical base pairs that make up human DNA.' There are additional links provided on research and publications in this field.

• MendelWeb - An 'educational resource for teachers and students interested in the origins of classical genetics, introductory data analysis, elementary plant science, and the history and literature of science.' Some material are given in German language.
• Office of Genetics & Disease Prevention of the Centre for Disease Control - The CDC has provided a host of information on human genetics and how it can be used to improve health and prevent disease. Worth visiting!
• University of Kansas: Genetics Education Center - A wide range of resources are provided on human genetics and the human genome project.

  INTERNATIONAL

• The  Charter of Fundamental Rights of the European Union - see in particular Art. 21, which prohibits "any discrimination... based on genetic features." It is in pdf format

• Council of Europe's Convention on Human Rights and Bio-medicine 1997 - see Art. 11 concerning the prohibition of discrimination based on genetic data.

• European Society of Human Genetics - Founded in 1967, it was established to 'promote research in basic and applied human and medical genetics and facilitate contact between all persons who share [those] aims.'

• GeneCards - Developed by the Crown Human Genome Center and Weizmann Institute of Science, this is a database of human genes, their products and their involvement in diseases.
• Genetic Privacy - Produced by the Genetics and Public Issues program at the National Center for Genome Resources, this explains the concept of genetic privacy and provides a useful bibliographic reference in this field.
• International Federation of Human Genetics Societies - Provides a list of human genetics societies across the world. Regular updates are also given on these developments.

• Genetics and privacy: a patchwork for protection - This report was compiled by the Health Privacy Project (Institute for Health Care Research and Policy, Georgetown University) and looks into the uses and disclosures of genetic information and its potential misuse.  It recommended further protection, because of the reluctancy of individuals to provide genetic information for research purposes. 
• Working document on genetic data has been issued by the European Data Protection Working Party, which examines issues surrounding the protection of genetic data. It sets out guidelines in safeguarding and protecting genetic data. The report is in pdf format.