Social impact of the Human Genome Project

1/5/06. By Clare Matterson

The Wellcome Trust has worked to raise awareness of the Human Genome Project and its possible personal and social implications, encouraging debate, discussion and ethical enquiry.

The Human Genome Project has undoubtedly had a major impact on biomedical research. Ultimately, it will be the ability to have a positive impact on the health of people and society that will prove whether the scientific effort and investment have been worthwhile. Therefore, it is important that research related to the human genome is carried out responsibly and within a society that is open to it.

This is why we at the Wellcome Trust have complemented our support for the science with other work based around the social impact and ethical dimensions of the Human Genome Project and human genetics more generally.

We use a multiplicity of approaches to work with and engage different audiences. Within the academic world, we aim to build the research base in biomedical ethics, and to encourage the application of that research by making it relevant to policy makers and practitioners. In 1999, we encouraged research that explored the legal, ethical and social issues associated with the establishment and use of collections of human biological tissue.

We are now in a position to review the outcomes of these studies and enhance our understanding of issues such as informed consent, and the extent to which genetic information requires novel or supplementary ethical and policy considerations. Through work such as this, we hope to inform research policy, regulation and governance to help realise the long-term potential of work such as the Human Genome Project.

Given the pace of increased scientific knowledge, it is vital that schoolteachers are able to keep up with the latest developments so that they can educate and inspire their pupils. However, investment in subject-based continuing professional development (CPD) in the UK has been neglected: over 50 per cent of secondary school science teachers received no science-based updating in the past five years. For this reason, we entered a £51 million partnership with the Government to establish state-of-the-art CPD training centres for science teachers across the UK. Here, teachers can learn about the latest developments in areas such as genetics, and can also be helped to tackle classroom debates about the wider social and ethical issues.

The Human Genome Project has elicited an enormous response from scientists and science communicators who are keen to enthuse the public about genetics, as well as engage in debate and dialogue about its social implications. Ventures as spectacular as the Wellcome Wing in London's Science Museum, which attracts over 2 million visitors a year, and small theatre productions such as 'Genetics for Blondes' by the Soho Theatre Company, which explores genetic issues in a humorous and accessible way, are examples of the numerous projects that have received support from our public engagement funding programme.

Our founder, Henry Wellcome, was fascinated by the history of medicine, and we continue to value this perspective. The Wellcome Library was fortunate to acquire the archive of Francis Crick, which contains correspondence, lecture notes, photographs, laboratory notebooks, and published and unpublished articles from 1938 to 2002. These are available in the Library, and a selection can be found on this website in the Crick papers section and as part of the National Library of Medicine Profiles in Science project. We are equally delighted that John Sulston has also agreed to give his papers and correspondence to the Wellcome Library.

It is probably fair to say that we are only beginning to feel the impact of the Human Genome Project. Much will depend upon how the discoveries leading from use of sequence data are applied in medicine or in other areas such as employment or insurance. The work we fund is carried out ultimately to benefit people, and we have a duty to build bridges with the public, helping to develop an environment of mutual respect and understanding.

Clare Matterson is Director of Medicine, Society and History at the Wellcome Trust.

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