We shed data as we walk through parks and pause on street corners — data that, at first glance, seems to have little to do with our health.
Smartphones communicate with cell towers, every tap on and off the bus is recorded, and our movements are captured by networks of CCTV cameras.
This tangle of information may offer scientists new insights into our wellbeing and state of mind, but are we comfortable being looked at so closely?
Some sites are necessarily more watched than others.
The Black Dog Institute is using CCTV footage from a known location in Sydney to automatically detect behavioural patterns that could predict suicide attempts.
The project is in its early stages, says the mental health organisation’s director, Professor Helen Christensen.
“If successful, this study paves the way for the creation of early warning detection systems to help prevent deaths at known hotspot locations before it is too late,” she said.
“Ground-breaking studies of this kind are critical to help find new and effective life-saving suicide prevention strategies.”
The CCTV footage has been shared by Sydney’s Woollahra Council, but consent has not been obtained from people in the footage, nor from their families.
This concerns Wendy Bonython, who studies health data and research ethics at Bond University’s law faculty.
“I think there would be a lot of family members who would be extremely distressed if they knew that complete strangers were looking at the final moments of their loved one’s life, without their knowledge or agreement,” Dr Bonython said.
The question of consent
Researchers are developing automatic early warning detection systems at known hotspot locations.
(Unsplash: Kevin Ku)
In Australia, sites where CCTV operates are often signposted, but they typically don’t share that you could end up in a research project.
Matt Frilingos, a spokesperson for Woollahra Council, says the area’s CCTV system is used “solely as a suicide prevention measure”.
“We are confident that the aims of the research being conducted by the Black Dog Institute align with the intention of the life-saving infrastructure in place at the site,” he said.
In Australia, research that collects data from humans must obtain ethics approval. And if you’re studying people, you typically need to get their permission.
Ms Christensen says the project, which passed the University of New South Wales’s human research ethics approval process, among other reviews, has obtained what is known as a “waiver of consent”.
“This was decided as the potential benefits of the trial outweigh any potential harm,” she said.
In her view, it is not possible for researchers to identify individuals from the footage alone.
“Our researchers have no prior knowledge or context to practically identify anyone appearing in the footage,” she said.
But Dr Bonython, who has not seen the study’s protocol, questions whether such CCTV footage can ever truly be anonymous, especially given most suicides are followed by a coronial inquest that identifies the person harmed.
“I can’t think of many circumstances where it is genuinely impossible to find someone to obtain consent from,” she said.
Black Dog and Woollahra Council did not disclose whether or not the footage is time stamped, if faces are blurred, or if passers-by are also captured, but the research body says it employs “rigorous research and data handling protocols” to ensure its studies comply with privacy and legislative requirements.
Legal and ethical?
While studies like this may be legal under New South Wales privacy law, whether they should be done is another question, says Bruce Baer Arnold of the University of Canberra Law School.
While footage of a public space may be obtained for a “good” purpose, Dr Baer wonders where similar studies might end.
For example, would it be appropriate use cameras to identify people who appear distressed in Sydney’s Central Station?
For other researchers in this space, the potential benefits of this work can outweigh issues of consent.
Brian Mishara, a psychology professor at the Université du Québec à Montréal, has also studied suicidal behaviours using CCTV footage from train platforms.
In his view, we cannot always expect to have privacy in public spaces.
Our behaviour is observable by other people, and when it’s studied by researchers, he argues, there is at least an extra level of protection.
“Usually the people who do look at it are people who have sworn to not divulge any information,” he said. “There is an anonymity.”
Of course, it’s not only the collection of sensitive data that matters, but how it is stored and disposed of.
Dr Christensen says only the immediate research team will have access to the footage, and they do not have permission to share or re-use it.
But Dr Bonython says we must remember the people potentially shown in the Black Dog CCTV footage are highly vulnerable.
“There is a very real risk that in our enthusiasm to curb the problem of suicide — and there is no doubt it is a significant problem — we can become a little too focused on the perceived or anticipated benefits for the many, at the expense of risk to the few,” she said.
