Experiments on patients could end

"I think it is the term research that sounds really bad and turns people off." Angela Ballantyne, University of Otago medical ethics lecturer

Doctors can legally experiment on adult coma patients in New Zealand without their consent if it’s in their ‘‘best interest’’.

But that might soon change, given that the Health and Disability Commissioner’s consultation on relevant legislation closes on Sunday.

Medical experts have welcomed the move because they feel the uncertainty about the repercussions needs to be addressed.

Some former coma patients have, however, thrown their support behind doctors doing whatever it takes to help people.

Palmerston North woman Jules Wilson was just 21 when a car crash in 2005 changed her life forever.

Wilson, now 32, spent 21⁄2 weeks in a coma and had a section of the side of her skull taken out to relieve swelling.

Doctors were unsure if she would pull through and were contemplating cutting through her forehead in a further effort to save her life.

She would have been the first person in New Zealand to have the front of her skull removed.

But Wilson showed enough signs of improvement that doctors decided to hold off ‘‘experimenting’’ on her.

Nearly 12 years on, she accepts whatever the doctors did was in an effort to save her.

‘‘I think they should be able to try everything they can.

‘‘If someone could have told me you will be a vegetable, do you want out, I would have said ‘yep’. ‘‘But the fact is you don’t know.’’ University of Auckland Faculty of Law associate professor Joanna Mary Manning said the law was restrictive.

‘‘A parent has legal power on behalf of a child under 16, if it is the child’s best interest.

‘‘However, there is essentially a legal vacuum. No-one can consent on behalf of an adult.’’

Manning said a law change would be needed for that.

‘‘There is considerable uncertainty as to whether it is lawful to involve people who are not able to give informed consent in medical research.

‘‘[However] if there is not research, then this class of patients may be deprived access to new medicines.’’

Manning said a code of strict safeguards would be needed.

Health and Disability Commissioner Anthony Hill said it was a complex and important issue.

‘‘Consumers who are unable to make informed decisions for themselves are particularly vulnerable to abuses of their rights and interests.’’

Hill said the law needed to protect people from cases like the infamous Unfortunate Experiment at National Women’s Hospital in Auckland.

It involved withholding treatment from women with cervical abnormalities without their knowledge or consent.

University of Otago medical ethics lecturer Dr Angela Ballantyne said it was a balancing act between vulnerable patients and the need for scientifically valid research.

Ballantyne said most people had no idea they could be subjected to testing and it was an important message to share with the public.

‘‘I think it is the term research that sounds really bad and turns people off.’’

She said the Unfortunate Experiment was an outlier and had no reviews by independent authorities.

‘‘[Now] most research in New Zealand goes through a research ethics committee and would be peer-reviewed.’’