Women's advocacy groups and research in breast cancer

This paper challenges women's advocacy groups to recognize their ethical obligation to promote the need for clinical research through programmes of public education. We identify 'informed consent' as the greatest obstacle to progress. Limitations to its achievement are described. The major tension in the doctor/patient relationship, which creates a clash of categorical imperatives for the clinician, is exacerbated by the current contemporary ethical model that the autonomy of the individual has dominance over individuals' involvement in the practice of evidence-based medicine for the good of society. Further obstacles of public suspicion, the anti-science lobby, financial recession and health services reforms are listed. Chance sighting of a 'Ladyplan' insurance scheme prompted a Lancet paper and editorial exploring ideas that women could insure themselves well by acquiring knowledge which would enable them to make informed decisions, should the need arise, thereby avoiding the trauma occasioned by ignorance of research methods. The development and working ethos of the Consumers' Advisory Group for Clinical Trials, built on exploration of the authors' vision of the potential of creating a working research partnership between health professionals and patients to break the impasse in progress., by sharing responsibility as joint owners, is described. This mutually educative mode of working led to identification of the duty of all beneficiaries of constantly improving outcomes, to work for society's enlightened understanding by campaigning to educate individuals while they are well from an early age. We advocate that discharge of societal responsibility, to begin to repay the debt for what has been euphemistically described as the 'social cost'. should be recognized by advocacy groups, by extending their activities into programmes of education to enlighten citizens, educating them about how they can redress the balance in their demands for rights. (C) 2001 Harcourt Publishers Ltd.