18 Nov 2019

Medical ethics boss urges Mike King's charity to destroy suicide letters

From Checkpoint, 5:15 pm on 18 November 2019

The head of a Ministry of Health ethics committee is calling for the immediate destruction of hundreds of suicide notes submitted to a study backed by comedian Mike King's Key to Life mental health charity.

The '1000 letters' study - launched in September - asked people to submit final notes or messages left by victims of suicide so they could be analysed for common themes to inform future interventions and suicide prevention efforts.

In October the Ministry of Health wrote to the trust, asking it to stop collecting letters immediately, because it does not have ethics committee approval, and there were privacy and safety concerns.

Mr King told Checkpoint in October he would not stop collecting the letters.

"This isn't North Korea. They aren't Donald Trump, they can't tell people what to do.

"People voluntarily gave them to us, hoping that we could come up with some themes and some commonalities to arm people with tools to understand why someone wishes to take their own life."

But the Ministry of Health's Health and Disability Ethics Committee chair Kate O'Connor told Checkpoint's Lisa Owen the context in which the data has been collected appeared to be "poorly considered".

"We have ethics committees in this country for a reason, a really good reason. Poor research can kill people."

Ms O'Connor said a range of people had complained about the '1000 Letters' campaign.

"There were clinical experts that gave us a formal complaint, and numerous emails and letters from people with lived experience of suicide.

"People who had been bereaved, people who had survived their own suicide attempt, and consumer advocates, people working in mental health."

Read more: Counsellors work free as Mike King's Gumboot Fund runs out of cash

In late October, the psychiatrist in charge of the '1000 Letters' campaign Dr Siale Foliaki acknowledged to Checkpoint that the study could do harm.

Ms O'Connor said initially the Ministry of Health wanted the study postponed, until research design and processes had been established, to protect potentially vulnerable participants.

Mr King's charitable trust confirmed to Ms O'Connor the project was ongoing, but in the trust's view it did not meet the threshold for a review by the ethics committee.

"I think calling it a project is simply wordplay. Research, inquiry, investigation, project - those words are interchangeable.

"They have collected data for the purposes of all analysing them. So no, our concerns are not allayed and we'll be passing our decision that there appears to be health research ongoing without ethics approval on to responsible authorities, such as the Health and Disability Commissioner and the Office of the Privacy Commissioner."

She said what the trust is doing is potentially very dangerous for people affected by suicide. "They're very vulnerable people."

The letters are research data, which has been collected without approval or properly informed consent, Ms O'Connor said, "and as such, I believe they should be destroyed".

"It's data that was collected unethically.

"We're not saying that there isn't value in these letters. We're saying that the context under which the data was collected appears to be poorly considered.

"We simply don't know what their research design is, how they are going to make valid findings based on what is likely not a representative sample of suicides in this country.

"So I would suggest it has pretty limited value," Ms O'Connor said.

"The value of research to the country is enormous in terms of having evidence-based conclusions that are valid. So it's impossible for any agency to base decisions on simple guesswork or on invalid research results."

Mr King was contacted by Checkpoint, but has made no comment.