The central objective of this meeting was to promote future interdisciplinary research into clinical genetics and genetic screening in our multicultural society. To that end, a group of approximately 60 professionals was brought together in Abergavenny for 2 days - from 28 to 30 March, 1994. The participants were drawn from several professional groups - predominantly health professionals involved in genetic services or public health medicine, and social or behavioural scientists including social anthropologists, sociologists and psychologists. It was hoped that there would be sufficient opportunity for informal discussions for participants to initiate proposals for future collaborative research.
After arrival on the first evening there was an opportunity for the participants to become acquainted, and there were two papers presented. These papers served the useful role of setting the scene from the perspectives of clinician (Bernadette Modell) and anthropologist (Marilyn Strathern). Reference was continually made to the themes discussed in these two papers during the meeting.
The following morning consisted of seven papers and a discussion, with Jeanette Edwards in the chair. The first two papers discussed the concept of "ethnic group" from a biological (Helen MacBeth) and a social (Ursula Sharma) perspective. Aamra Darr reported her studies of the networks of kinship, information flow and family support in British Pakistani families with thalassaemia. Gulshen Karbani reported on relevant experience obtained in the genetic counselling service in Leeds and Bradford. Nadeem Quereshi discussed the place of genetics in primary health care, particularly in relation to ethnic minority groups. Sue Proctor presented the initial findings from a large study in Bradford that is evaluating the factors that contribute to adverse birth outcomes in British Pakistani families. Finally, Charlie Davison presented his studies of popular understandings of inheritance and health.
Everyone attending the meeting will have brought with them their personal and professional perspectives on "ethnic groups". These papers served to introduce the biological facts and clinical reality of genetic difference between ethnic groups in Britain (insofar as they are understood) to the social scientists, and to introduce social science perspectives on ethnic and cultural groups and kinship networks to the clinicians present.
In the afternoon of that day, there were five parallel discussion groups that sought to clarify the scope for future research in this field of "cross-cultural genetics". Representatives from these groups afterwards reported back to the whole group and a vigorous discussion ensued. It became clear that the different perspectives of some clinicians and some social scientists made it difficult for them to communicate effectively.
Following this, the MRC guest lecture was given by Professor Olu Akinyanju. The development of genetic counselling services for the haemoglobinopathies in Nigeria was shown to be emerging naturally from a treatment service for these conditions, and pressure to establish genetic screening programmes divorced from concern for the welfare of affected individuals was being (so far) effectively resisted. All concurred that there were important lessons here for the provision of genetic services in developed, as well as evolving, countries.
There was a discussion of the issues surrounding sex selection in India and the eugenics programme in China in the early evening, which was again useful in making us all aware of the different perspectives that we brought to the field of genetics. Do the different economic circumstances in developing countries justify the adoption of different goals and methods in genetic screening from those invoked in Western countries? The tensions of the day were then soothed away during the entertainment provided by Cwmni Dawns Werin (a Welsh folk dance company), in which we all became participants.
On the final morning, there were three stimulating papers followed by lengthy discussions. The papers addressed political and social issues, particularly the social consequences of genetic screening programmes, in particular their effects on those with disabilities and on women. The ensuing discussion was wide-ranging and challenging. In the final session of the morning, the discussion was steered back to the question of our agendas for future research. Several participants outlined their thoughts on where social research into genetic issues should be directed, and how research with ethnic minority groups could be helpful (both to the clinical services provided to members of these groups, and to our understanding of their social structure in operation).
It is not possible to evaluate the success of this meeting after just a few weeks, when it will necessarily take some years for research proposals to mature into completed studies. However, there has already been a lot of feedback indicating that many participants have found the event useful - they have made promising contacts in other disciplines, and these are leading towards the construction of proposals for future, interdisciplinary research.
The immediate reaction to the meeting on the part of most participants has been that it was stimulating and enjoyable, and that the need for future research was clearly demonstrated. The organisers, however, had not anticipated that the inevitable interdisciplinary differences in perspectives at the meeting would dominate the discussions in the second half of the meeting to the extent that they did. The interdisciplinary difficulties that emerged will clearly be very important in shaping future collaborative studies in this field. The two interrelated areas of potential dispute that will need to be resolved in any collaboration are:
(i) The question of power: whose research is it? Who will plan and direct the research?
(ii) The choice of question for the research to address. Can both parties acknowledge the research agenda of their research partner, or will they want the research to address issues drawn from the agenda of their own discipline?
It is important to acknowledge the potential for these "cross-cultural" conflicts in advance. In this way, and with understanding and goodwill on both parts, it will be possible to design research that addresses questions from the research agendas of at least two different professional groups.
In addition to the fostering of personal contacts, the other short-to-medium term achievement of the meeting will, we hope, be the publication of papers presented at Abergavenny. We are still negotiating with publishers over this, and the presenters are revising their contributions in the light of discussion at the meeting, and to make them suitable for publication.
In summary, then, the meeting certainly achieved its goal of establishing contact and discussions between the different disciplines interested in cross-cultural genetics. The publication of a volume of papers from the meeting is expected, and a second meeting may be organised in 2 years’ time. It is not possible to know how successful the meeting will prove to have been in terms of future research undertaken, but we are optimistic that important links have been established that are likely to be productive.