INTRODUCTION

In the United Kingdom regional genetic services are multidisciplinary; clinical geneticists work with genetic counsellors, members of an emerging profession whose training and competencies are currently being formalised. Genetic counsellors have skills in communicating genetic facts and provide support and psychological counselling around genetic diagnosis and testing (Kenen, 1984). A M.Sc. genetic counselling training course is being set up at the Medical Faculty, Gothenburg University to start in January 2002.

In an international perspective, it is highly unclear how the professionalisation of such a new specialty connects to the complexity of the ethics and practical conditions of genetic counselling (Biesecker and Marteau, 1999). The increasing use of genetic information in different areas of health care makes genetic counsellors' judgement of the significance of genetic information in the particular situation and context all the more important (Bengtsson, 1999).

AIM

During my research I will aim for illuminating the following questions: What values and norms are part of the professional ethics of genetic counselling? How do they correspond with the genetic technological challenges? What alternatives to non-directive counselling are emerging?

The main object is to recover normative ethical content through the investigation of genetic counselling educational programs and the subsequent reflection on their composition.

METHODLOGY

The method to be used is grounded in "participatory relfection" (Ten Have and Lelie, 1998) to proceed from empirical knowledge, viz. moral experience. Their understanding of ethics is to redefine, clarify and expose different dimensions so that the relevant moral problems can be understood.

The fact that the Institute of Medical Genetics, University of Wales College of Medicine has started a new genetic counselling training course in September 2000 will shape angels of incidence for the studies of the growth of the profession in Sweden. Comparative studes are to be made between the educational program in Gothenburg and the training course in Cardiff. Students and teachers will be interviewed, and practising genetic counsellors in key positions. Lessons will also be drawn from courses at Manchester and Sheffield, as well as from the United States (while in this case primarly by a review of the literature).

The field work being dependent on the canvassing for support among the responsible persons for the educational programs is a sensitive issue. Arguably, my long experience from working in a clinical genetics laboratory will be of help when analysing internal and external moralities. Still, how independent can the research be, given the practical conditions for participatory observation?

REFERENCES

Bengtsson K. (1999) 'Genetic information and counselling in the health care setting: A question of autonomy?' MA thesis, University of Central Lancashire

Biesecker B.B. and Marteau T.M. (1999) 'The future of genetic counselling: an international perspective' Nature Genetics 22: 133-137

Clarke A.J. (2001) 'Genetic counseling' In: Chadwick R. (ed.) The Concise Encyclopedia of Ethics of New Technologies. Academic Press

Kenen R.H. (1984) 'Genetic counseling: the development of a new inter-disciplinary field' Social Science and Medicine 18: 541-549

Lawrence J. (1999) Argument for Action: Ethics and Professional Conduct. Aldershot, UK: Avebury

Skirton H. et al. (1998) 'Recommendations for education and training of genetic nurses and counsellors in the United Kingdom' Journal of Medical Genetics 35: 410-412

Ten Have HAMJ and Lelie A. (1998) 'Medical ethics between theory and practice' Theoretical Medicine and Bioethics 19: 263-276

* PhD scholarship, Supervisors: Matti Häyry and Mairi Levitt

This study is part of the research project Genetic Counselling and Presymptomatic Genetic Testing: Goals and Ethics for Clinical Practice, Caring and Education