What are the rights of parents and fetuses when genetic tests reveal a 50% likelihood of a disabling illness by the time a child reaches adulthood? Should patients be required to give active consent if their health data are to be used in the future for unforeseeable biomedical research? How should different viewpoints on religion, philosophy and the natural and social sciences be brought to bear in setting regulations?

These are the sorts of questions that bioethicists deal with. Some researchers, however, pay little heed to bioethics, or regard it as a potential impediment to their work. Concerns about the relationship between bioethics and science are as old as the field itself.

Studies into the ethical, legal and social implications (ELSI) of the human genome project, funded mainly by the National Institutes of Health (NIH), were responsible for the rapid expansion of academic bioethics in the United States. But this diverse community has attracted criticism from researchers for being too remote from real science — and from public-interest groups for being too close to it. The latter want to know how it can present a convincing critique of genomics, given its reliance on NIH institutes and investigators.

“The professional field of bioethics has a great deal to say about many fascinating things, but people in this profession rarely say ‘no’,” political scientist Langdon Winner of Rensselaer Polytechnic Institute in New York state told the House science committee in April 2003. “Indeed, there is a tendency for career-conscious social scientists and humanists to become a little too cosy with researchers in science and engineering, telling them exactly what they want to hear.”

After the completion of the human genome project, the ELSI programme at the NIH evolved to direct significant support to four centres of excellence. The National Human Genome Research Institute, which provides most of the funding, says it hopes that these centres will each develop a sufficiently strong identity to support the growth of the next generation of ELSI researchers.

Several of these bioethics centres of excellence say they are trying to establish closer links with more laboratory researchers.

Several of these bioethics centres of excellence say they are trying to establish closer links with more laboratory researchers (see page 1104), and that their bioethicists will make themselves more readily available to provide rapid advice to faculty members. They see this as a way of fostering more ethical thinking in the design and execution of research, long before they would otherwise think of bioethics.

Researchers have to seek ethical advice willingly and then be prepared to act on it. There is no enforcement mechanism for bioethics or sanctions; and, unlike Institutional Review Boards, bioethics advice rarely carries any weight in law. But that should not dissuade more ethicists from getting involved with the practical applications of their expertise.

Moreover, this kind of advice may turn out to serve a useful promotional function for bioethics itself. One part of this is simply to increase awareness of ethics; it is telling that half of the enquiries during the pilot phase of the first of these projects, at Stanford University in California, simply required lab researchers to be reminded of existing ethical guidelines. But much of the advice is provided in confidence, raising issues of transparency in the event that research practices violate ethical norms.

Notwithstanding concerns about excessive cosiness with scientists, an academic bioethics community that is too aloof won't help science or ethics. As bioethicists strive to be heard beyond their own community, and for their advice to be valued, these models provide one useful way forwards.