Last week I spent a considerable amount of time working on a submission. This time it was my own personal submission. The Auckland Women’s Health Council’s new co-ordinator was also busy working on her first submission for the AWHC on the same consultation document – the Health and Disability Commissioner’s consultation on research involving adult participants who are unable to provide informed consent to being enrolled in research.
Producing this submission gave me a great feeling of satisfaction and a sense of completion as the fact that vulnerable populations of people, including unconscious patients in intensive care units, young adults with Down syndrome, patients with dementia, prisoners, etc, are being enrolled in clinical trials and other forms of research without their prior consent has outraged me for some years. A front-page article in the NZ Herald three years ago about the practice had not resulted in action from either the Ministry of Health who oversee the Health and Disability ethics committees or an inquiry by the Health and Disability Commissioner (HDC). Three years of writing letters and emails to the Commissioner finally resulted in some action – the production of a consultation document. Last year as the months ticked by I felt an increasing sense of despair as the promised consultation failed to eventuate. Finally, at the end of February, the HDC released the long-awaited consultation document and I counted my lucky stars that I had survived long enough to not only produce a submission, but was still capable of being able to go all out on my own submission. This was no mean feat as the submission had to be completed on-line and it proved to be a very time-consuming and clunky process. I felt a profound sense of completion once I had pressed the “submit” button. Whether it makes any difference is not as important as my being able to call upon my eight years of experience attending ethics committee meetings and exercise my democratic right to contribute a consumer/patient perspective on a practice that I had thought was ended by the 1987/88 Cartwright Inquiry and the release of the Judge Silvia Cartwright’s report in August 1988. The fact that the New Zealand government allows it to continue is against not only international agreements we have signed but is also unethical and illegal.