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Genetics and regulation

How genetic research, and its application in medicine and society, is regulated.

News

Image for EU Ministers to explore legislation for sharing DNA and fingerprint data
European Union Ministers from the 27 Member States have informally agreed to explore a plan that would enable the exchange of personal data across national borders. 22/01/07
Image for US Congress tries again to propose genetic discrimination legislation
The US House of Representatives has introduced legislation aimed at protecting individuals against potential genetic discrimination in the areas of employment and the provision of health insurance. 22/01/07
Image for Review of the Human Fertilisation and Embyology Act is published
A white paper has been published with proposed revisions to the Human Fertilisation and Embryology Act. 19/12/06
Image for AMS calls for reform of personal medical data regulations
The Academy of Medical Sciences has called on regulators to reform guidance on the use of personal medical data in research. 19/01/06
Image for European Parliament agrees resolution on biotech patents
Patents on human DNA should be granted only for 'concrete applications', argues a resolution from the European Parliament. 28/10/05
Image for European Commission to monitor biotech patents
The European Commission has released its second report on the implementation of the Directive on the legal protection of biotechnological inventions (98/44/EC). 08/08/05
Image for Human Tissue Authority members announced
The UK Department of Health has announced the membership of the Human Tissue Authority. 04/04/05
Image for UN committee agrees non-binding declaration banning human cloning
After fierce debate on human cloning, the Sixth Committee (Legal) reach agreement on a non-binding ban. 24/02/05
Image for US Senate approves anti-genetic discrimination legislation
The US Senate has approved, by a vote of 98-0, 'A bill to prohibit discrimination on the basis of genetic information with respect to health insurance and employment.' 18/02/05
Image for German government drafts legislation to allow genetic tests in employment
As part of a package of measures addressing genetic engineering and biotechnology, the German government has drafted legislation to allow employers to require job seekers to take genetic tests. 25/10/04
Image for HFEA relaxes policy on embryo screening for tissue typing
Couples can seek permission to choose an embryo with a tissue type that matches a seriously ill sibling. 22/07/04
Image for UK Government to create Regulatory Authority for Fertility and Tissue
The Human Fertilisation and Embryology Authority and proposed Human Tissue Authority will merge to form the Regulatory Authority for Fertility and Tissue. 22/07/04
Image for EC reports on Life Sciences and Biotechnology Strategy
Progress towards strategic vision for life sciences and biotechnology up to 2010. 27/04/04
Image for European Parliament adopts human tissue directive
Directive on human cells and tissues for therapeutic use nears approval. 17/12/03
Image for Human Tissue Bill published
Bill published almost five years after the first internal inquiry into organ retention at Alder Hey Children's Hospital in Liverpool. 05/12/03
Image for New HFEA recommendations on sex selection
The Human Fertilisation and Embryology Authority (HFEA) has announced its recommendations to the Government on gender selection. 12/11/03
Image for Human Fertilisation and Embryology Act 1990 to be reviewed
The UK Parliament Science and Technology Committee has announced that it will review the Human Fertilisation and Embryology Act 1990. 06/11/03
Image for US Senate bill outlaws genetic discrimination
Prohibiting the use of genetic information by insurers or employers. 17/10/03
Image for The Department of Health, intellectual property rights and genetics
New report urges the UK Department of Health to take an active role in policy for intellectual property rights and genetics. 06/08/03
Image for European Commission proposes rules for EU funding of embryonic stem-cell research
Proposing that research be allowed on embryonic stem-cells derived from embryos 'left over' after IVF treatment. 17/07/03
Image for Council of Europe draft Protocol on biomedical research
Protocol on measures to protect people taking part in biomedical research projects. 03/07/03
Image for UK Government publishes White Paper on Genetics in the NHS
£50 million to help integrate genetics into health services. 26/06/03
Image for European regulation of use of human cells and tissues moves ahead
Europe's Council of Ministers approves Commission's amendments to draft Directive on human cells and tissues for therapeutic use. 24/06/03
Image for US expected to ban use of genetic tests by insurers and employers
US Senate Committee approved new bill. 04/06/03
Image for Appeal Court judgement in the Hashmi case
Full judgement points out specific nature of the licence granted for the Hashmi's treatment. 25/05/03
Image for Scientific research and intellectual property rights
Balancing public benefits from scientific research against intellectual property rights: the Royal Society reports. 28/04/03
Image for Hashmi family allowed to use PGD with tissue typing
Appeal Court decides that HFEA has power to allow preimplantation genetic diagnosis with tissue typing. 10/04/03
Image for Europe moves towards regulation of the therapeutic use of human cells and tissues
Directive on "standards of quality and safety for the donation, procurement, testing, processing, storage, and distribution of human tissues and cells". 11/03/03
Image for European Commission steps up pressure on states to implement patents directive
EC threatens nine states over their failure to comply with 1998 patents directive. 05/02/03
Image for Australian Parliament votes to ban all human cloning
The upper house of Australia's Federal Parliament (the Senate) has passed a bill, which has already successfully passed through the lower house (the House of Representatives), to ban all forms of human cloning. 26/11/02
Image for Information Commissioner issues legal guidance on confidential medical data
The Information Commissioner has issued legal guidance on the application of the Data Protection Act 1998 to the use and disclosure of health data. 22/05/02
Image for Genetics and health privacy in the USA
The Health Privacy Project at Georgetown University in the US has published a report on the extent to which the US federal Health Insurance Portability and Accountability Act (HIPAA), passed in 1996 and in force since April 2001, protects genetic information. 09/05/02
"The [human genome] sequence carries no meaning; it is how people use it that matters. It could bring massive benefits, massive problems, or both." Jeremy Cherfas
               

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