Dramatic scientific advances look likely to change the face of medicine as we know it, heralding not only new treatments, but also new ways of diagnosing disease, the tailoring of medicines to individuals, and greater emphasis on disease prevention. Inevitably, these developments in medical science will present individuals (and society more generally) with a new set of challenges, and their ramifications in many areas of our lives are likely to be far-reaching.

For example, gene testing may become a routine part of healthcare in the future, as part of a move towards preventive medicine – helping people to stay healthy. But these developments might lead to populations being classified according to their genetic make-up, raising serious ethical questions about equality and discrimination. It is therefore important to ensure that the consequences and implications are predicted and as far as possible managed so that their impact on society will be a positive one.

As one of the country’s major research-funding agencies in this fast-moving area, the Wellcome Trust is increasingly aware of its responsibility to consider the impact of research it funds. As well as being committed to a programme of public engagement work, seeking to discover public views about key issues such as biological sample collection it also runs a programme of research into the social, ethical and public policy implications of advances in biomedicine – the Biomedical Ethics Programme. The two approaches complement each other, as research can provide an additional way of capturing and illuminating people’s different experiences and social values.

The key aim of these and related initiatives is to contribute to an evidence base to support well-informed and responsible public policy making. Too often, the issues have in the past generated more sound than light, which in the long term is in few people’s interests.

The programme aims to support multidisciplinary approaches, a reflection of the way issues increasingly cross traditional boundaries between disciplines. Developments in biomedical science are justifiably the territory of biomedical researchers, healthcare professionals, the legal profession, social scientists, moral philosophers, even theologians. One aim of the programme has been to encourage these groups to interact, to bring their different expertise to bear on common problems, and perhaps learn a little more about each other’s ways of thinking.

Thus, as well as research, the programme funds a number of support activities to help develop networks of information flow and interdisciplinary working. These include workshops and conferences to bring researchers together, while a biomedical ethics website is being produced by three partners from three universities – Mike Parker, Ruth Chadwick and Julian Kinderlerer from the Universities of Oxford, Lancaster and Sheffield – to act as a central information resource, centre of activity and portal for researchers and others. Staff at the Trust also help to bring together researchers with similar interests, and details of all grants awarded are published on the Trust’s website, along with short project summaries.

Researchers are encouraged to concentrate on issues that need tackling now or in the near future, and are asked to indicate how their work could provide information useful to policy making. Publication of research summaries on the web also helps disseminate information to key audiences.

The programme offers a range of support, through competitive grants schemes. Given that this is a relatively new area of research, a specific aim is to help build national research capacity in the field. As well as project grant support, the programme offers PhD studentships and postdoctoral fellowships, as well as grants to encourage experts from other fields to move into the field. The programme also runs annual summer schools, which provide postgraduates and others new to the area with an intensive introduction to research methods, research themes and grant writing.

The programme primarily supports research related to genetics and neurosciences – key areas, and ones in which the Trust has substantial scientific interests. Within these general areas, the schemes operate in response mode, although the Trust has also identified specific high-priority issues – pharmacogenetics and human biological sample collections – where there is likely to be a public policy demand for knowledge and expert opinion. Ethical questions in these two areas are closely linked, since pharmacogenetic researchers are some of the biggest users of DNA collections.

To date, the programme has funded 34 research grants plus a number of symposia. The successful applications clearly illustrate some breadth of issues that need to be considered. The sharing of genetic information is a recurring theme, in terms of confidentiality and access by employers or others, as well as information sharing within families. The purpose and practice of genetic counselling is also well covered. The special calls for proposals have led to several projects on topics related to pharmacogenetics and biological sample collection.

The awards in the area of mental health and neuroscience cover such topics as the legal implications of a better understanding of brain function – particularly in terms of personal responsibility for one’s actions – and the difficulties associated with gaining informed consent from individuals with impaired or unusual mental function.

These areas cover some of the most challenging conundrums facing society, and make us question some of our deepest assumptions. At what point does behaviour become ‘abnormal’, and who has the right to say so? Is a genetic predisposition or neuroscientific explanation ever a mitigating factor for crime? Do we have any responsibility to share information with other family members who might be affected by our genetic inheritance?

There will seldom be easy answers to these and a host of other tricky questions. But by identifying some of the key issues to be considered, gathering and analysing information, and studying what goes on in the real world, research funded through the Biomedical Ethics Programme can begin to generate a much-needed knowledge and evidence base for the field and thus help to provide a foundation for rational discourse and decision making.

Two articles in this issue of Wellcome News provide a flavour of some of the biomedical ethics research funded by the Wellcome Trust. Professor Jonathan Glover’s group at the Centre for Medical Law and Ethics is working on the links between brain function and antisocial behaviour, including a collaborative project with consultant neurologist Professor Martin Rossor. Such work will have important implications for the legal profession. A second article covers the work of Professor Nikolas Rose and colleagues, whose expertise in social science will provide a novel slant on developments in psychiatry and genetics.

One of the Wellcome Trust’s aims is to contribute to the knowledge base – not just to develop a better scientific understanding of the natural world but also to provide a clearer picture of the place of medicine in contemporary society. The Biomedical Ethics Programme makes an important contribution to that aim. Funding independent research into the social, ethical and public policy consequences of genetics and neuroscience will shed light on how medical advances will be delivered in the hospital, surgery or clinic. Moreover, much of the impact of new understanding and technologies will be felt outside the clinic – in courtrooms, for example, and in people’s homes. By identifying how this comes about in the ‘real world’, biomedical ethics research may also usefully help to shape the direction of biomedical research.

See also

• Biomedical Ethics Programme: Details of the Trust's funding schemes for this field.
• A sample solution: Article describing public attitudes to human sample collection
• Mad, bad or ill?: Article describing the work of Professor Jonathan Glover’s group at the Centre for Medical Law and Ethics on the new insights into antisocial behaviour funded under the Trust's Biomedical Ethics Programme