Women's advocacy groups and research in breast cancer

This paper challenges women's advocacy groups to recognize their ethical ob ligation to promote the need for clinical research through programmes of pu blic education. We identify 'informed consent' as the greatest obstacle to progress. Limitations to its achievement are described. The major tension i n the doctor/patient relationship, which creates a clash of categorical imp eratives for the clinician, is exacerbated by the current contemporary ethi cal model that the autonomy of the individual has dominance over individual s' involvement in the practice of evidence-based medicine for the good of s ociety. Further obstacles of public suspicion, the anti-science lobby, fina ncial recession and health services reforms are listed. Chance sighting of a 'Ladyplan' insurance scheme prompted a Lancet paper an d editorial exploring ideas that women could insure themselves well by acqu iring knowledge which would enable them to make informed decisions, should the need arise, thereby avoiding the trauma occasioned by ignorance of rese arch methods. The development and working ethos of the Consumers' Advisory Group for Clin ical Trials, built on exploration of the authors' vision of the potential o f creating a working research partnership between health professionals and patients to break the impasse in progress., by sharing responsibility as jo int owners, is described. This mutually educative mode of working led to id entification of the duty of all beneficiaries of constantly improving outco mes, to work for society's enlightened understanding by campaigning to educ ate individuals while they are well from an early age. We advocate that discharge of societal responsibility, to begin to repay th e debt for what has been euphemistically described as the 'social cost'. sh ould be recognized by advocacy groups, by extending their activities into p rogrammes of education to enlighten citizens, educating them about how they can redress the balance in their demands for rights. (C) 2001 Harcourt Pub lishers Ltd.