Ethical grey areas – and a lack of readily available guidance on how to navigate them – are hampering improvements to the way academics recruit human research subjects, according to a study.
The Australian research found that ethics committees were struggling to stay abreast of the implications of using online tools and social media to enlist and communicate with research participants. This in turn prompts some researchers to take a conservative approach, squandering opportunities to slash costs and boost the statistical power of their findings because they feared being vetoed by the ethical gatekeepers.
The study, published in Internet Research, identifies a need for better guidance around the use of the internet as a research tool – particularly for tracking down participants who had dropped out of longitudinal studies. Author Sharinne Crawford said that the team had conceived the two-year study after debating the appropriateness of using social media to trace “very vulnerable” subjects for follow-up research.
“They might move around or change their phone numbers or names,” said Dr Crawford, a health researcher with the Judith Lumley Centre at Melbourne’s La Trobe University. “We thought, is it ethical for us to go on to Facebook for example and try and reconnect with them?
“There was nothing in any guidelines that told us whether it was or wasn’t ethical. The ethics committee people we spoke to subsequently had never come across proposals like that before, so they were unsure as well.”
Dr Crawford said the key ethical question was how researchers met their duty of care to research participants, in situations where they often had no direct personal interaction – unlike traditional recruitment, which usually necessitated at least telephone contact.
For example, researchers may have no way of knowing that survey questions on subjects like mental health or self-harm had triggered traumatic reactions among participants.
Other concerns related to data security dangers, such as blowing the cover of people hiding from abusive partners, and the risk of recruiting inappropriately young children who pretended to be older – along with the difficulties of obtaining parental consent.
On the other hand, the study found, internet-based approaches could help overcome one of the “greatest challenges” to public health research – the “inability to effectively attract and retain participants from a broad range of backgrounds”.
It said only around half of people who agreed to participate in research ended up doing so, with these rates declining, while attrition in longitudinal studies ranged up to 70 per cent. “This poses a major threat to timely and cost-efficient study completion, introduces the potential for sample bias and limits the generalisability of study findings. The internet offers a potential solution to these challenges.”
Dr Crawford said the ethical pitfalls of internet-based recruitment could often be overcome with planning, such as by providing clear links to online support services. She said researchers should also strive for closer relationships and up-front communication with ethics committees, “making sure they understand what you’re planning to do and are on board”.
She said committees had a complicated role balancing support for research with protection of participants and institutions – a time-consuming duty their members embraced voluntarily, often in retirement.
“A lot of them lack familiarity with social media,” she added. “Keeping up with all the different technologies – how they work, what they do – seemed to amplify some of the difficulties and frustrations.”