Invitation to a press briefing from the Campaign Against Human Genetic Engineering (CAHGE)
The Human Genome Project -- what about the ethics?
The international Human Genome Project (HGP) will soon announce the first draft of the DNA sequence of the human genome. But in the excitement about the medical and scientific revolution, vital ethical and social issues are being swept under the carpet. Many people are concerned that the HGP may usher in new forms of discrimination and ultimately, a return of eugenics.
The newly-formed Campaign Against Human Genetic Engineering1 is the first watchdog group in Britain set up to monitor and stimulate public debate about human genetics. In order to address the critical policy and ethical issues raised by the HGP, CAHGE has brought together a panel of key experts for a press briefing at the British Medical Association, Tavistock Sq., London WC1 from 10.30am-12.30 on June 14th.
- Dr Richard Nicholson, editor of the Bulletin of Medical Ethics, will argue that the HGP will not help the vast majority of humanity. The main determinants of health are social and environmental, especially poverty and infections. After ten years of gene therapy there have been several deaths and and hundreds of adverse events, but no cures. Dr Nicholson's statement
- Dr Margaret Llewellyn of Sheffield University will examine the commercial incentives behind human genetics research and the drive to patent human genes. Does this serve the interests of patients and of science and do we want a small number of companies to control the future of medicine? Statement by David King in Dr Llewellyn's absence
- Agnes Fletcher, of the Royal Association for Disability and Rehabilitation, will look at the potential eugenic implications of the new genetic knowledge. For the near future the only application of genetic information will be in prenatal or pre-implantation genetic testing. Will this give rise to a new consumer eugenics which attempts to eliminate disabled people? Agnes Fletcher's statement
- Dr David King of CAHGE will argue that the proliferation of genetic tests and the proposed UK gene bank poses threats to privacy and will lead to genetic discrimination in insurance and employment. These risks are exacerbated by a lack of adequate regulation over the genetic testing and insurance industries. Dr King's statement
The speakers and some members of the campaign will be available for interview afterwards. Please let us know by e-mail (firstname.lastname@example.org) if you will be attending the briefing.
Notes for editors
1. The Campaign Against Human Genetic Engineering recognises there will be some benefits in human genetics research, but is absolutely opposed to the (germ line) genetic engineering of human beings.
2. Dr. Richard Nicholson is a paediatrician and an internationally recognised expert on medical ethics. Dr. Margaret Llewellyn is a senior lecturer in the Law Department of Sheffield University and a specialist in intellectual property law. Agnes Fletcher is Head of Communications at RADAR. Dr. David King is a geneticist and editor of GenEthics News, a newsletter on ethical and social issues in genetics.