A voice for women's health

HDC Consultation on Non-consensual Reseach - December 2016

December 2016

The AWHC has finally received a response from Health & Disability Commissioner Anthony Hill to the Official Information Act request we lodged seeking information about the consultation process on patients who are enrolled in clinical trials without their consent.   

The brief letter makes for very disheartening reading and reveals that very little progress has been made. The HDC is obviously in no hurry to tackle this difficult and contentious issue.


 
Consultation Document
The AWHC wanted to know the date on which the consultation document will be released. The letter advised that “the date for release of the consultation document has not yet been determined.” The excuse given for the ongoing delay is that “the proposed consultation raises several complex and sensitive issues of great public importance” and the HDC is working with the Expert Advisory Group to ensure that the issues are clearly and fairly represented. 

The letter goes to explain that “the details of the consultation process continue to be refined and the expected timeframe for the consultation has not yet been finalised.”

This raises serious questions about the apparent reluctance of the HDC to act with the required urgency to protect the rights of a wide range of very vulnerable patients/research participants. The topic has already received extensive media coverage and been the subject of a paper published in a reputable journal. (1) (2) Meanwhile the research continues, thus normalising the practice of enrolling an increasing range of research participants who for various reasons are unable to give consent.

The HDC goes on to state the obvious – the public will be invited to provide comments on the questions posed in the consultation document, and the consultation process will begin once the document is published. 

The Commissioner is also planning to organise focus groups and/or public meetings to facilitate discussion of the issues.  

 
Literature Review

The review of the literature is an ongoing process. The Commissioner says that his office and the Expert Advisory Group “have reviewed numerous publications from New Zealand and overseas during their work on the consultation document” and that “further literature may be consulted if and when new issues arise in the preparation of that document.”

 
The Expert Advisory Group

The AWHC also wanted to know who the members of the Expert Advisory Group are. The six members were appointed on 11 July 2016. They are:

  • Ms Jane Bawden (Chair)

  • Dr Colin McArthur

  • Professor Alan Merry

  • Dr Brigit Mirfin-Veitch

  • Dr Jeanne Snelling

  • Ms Teresa Wall

Ms Jane Bawden is a lawyer with a background in human rights, medical and health issues. Dr McArthur is an intensive care specialist. Professor Alan Merry practices in anaesthesia and chronic pain management, Dr Brigit Mirfin-Veitch is a sociologist, Director of the Donald Beasley Institute and has been a member of the Institute’s research team since 1994. Dr Jeanne Snelling is an academic lawyer and a Research Fellow at the Bioethics Centre in Dunedin. Ms Teresa Wall, formerly deputy director-general of Maori health in the Ministry of Health, is currently responsible for cross-government relationships and the Trans Pacific Partnership.  

“The role of the Expert Advisory Group is to advise and assist me in relation to the consultation,” the HDC explains in his letter, and they “were selected primarily to provide expert advice relevant to their particular areas of knowledge and experience, rather than to represent the views of their organisation.” 

Notably absent from this select group of health professionals and academics is the voice of the consumer. This is an unfortunate although not entirely unexpected omission and casts doubt on the genuineness of the consultation process before it has even begun.  

Given that two and a half years after the issue hit the headlines the HDC is still not willing to even commit to a date for the publication of the consultation document, it is difficult to have much faith in what is or is not happening in the office of the HDC.

References
  1. http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11254381
  2. Professor Joanna Manning. “Non-consensual clinical research in New Zealand: Law reform urgently needed.” Journal of Law and Medicine. 2016 23 JLM 516.
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