Various institutions and organisations have developed a range of codes of ethics over many years to protect the rights of those who participate in their research. In some areas, however, there is still a long way to go.
An example is research that involves disabled people. “There is a huge need to protect participants but also, at the same time, get their voices heard," said Dr Martha Geiger, a senior lecturer at Stellenbosch University's Centre for Disability and Rehabilitation Studies (CDRS).
“For instance, people with communication disabilities such as the deaf or persons with intellectual disabilities are often not included in research. We need to find ways so they can participate and be heard, yet at the same time be protected."
This is precisely what the CDRS is now trying to do. Along with the University of Cape Town's Division of Disability Studies and the City of Cape Town, it is working on developing a code of ethics for research with disabled people in Cape Town.
The joint research project, funded by the Cape Higher Education Consortium, started off by conducting research among people with disabilities: “Although it is a small study, it proves the need to pay specific attention to persons with disabilities," Geiger explained.
Based on the responses of the participants, the team came up with a draft code featuring several key guidelines. “We identified five requests from the disabled community," said Geiger, the primary investigator.
The first request was to be included in research – not only as participants in studies conducted by others, but in all stages of the research process, including in the choice of topics and decisions about funding.
“They also asked for respect," added Geiger. “It was quite scary to hear that sometimes the right of persons with disabilities to say no didn't seem to be respected." Even more disturbing was that some researchers went beyond research questions and asked for private details.
Thirdly, the draft code requested that research information be available in more accessible formats. “One example was that some invitations to participate in research on tuberculosis don't reach the deaf population, yet many of them are affected," said Geiger.
“Even in our research, we were reprimanded by persons with intellectual disabilities and persons with mental illnesses, who told us that the questions were too difficult, that they needed to be simplified for them to be able to access them."
The fourth request concerned transparency in research. “The planning, monitoring and evaluation need to be transparent," emphasised Geiger.
The fifth request – for accountability – elicited a lot of discussion. “Persons with disabilities have very often been participants in research repeatedly, yet they never hear the findings of the research they have participated in," said Geiger. “That was a repeated request."
The research team is justifiably proud of its pioneering work. “The draft code is much more specific than the broad codes of ethics for research," noted Geiger. “We see it as a reminder for researchers and ethics committees."
Equally importantly, the draft code was aimed at people with disabilities and at disabled people's organisations: “We see it as an empowerment tool. For instance, we were able to share the pamphlet with participants in Khayelitsha."
However, at the same time, Geiger was at pains to stress that the draft code was not a definitive set of guidelines for research with people with disabilities: “It is the start of a conversation. It mustn't be seen as a final word."
The team has various ideas on how to take the project forward. Geiger's CDRS colleague, Dr Chioma Ohajunwa, has already written an issue brief, with the help of the university's Centre for Evidence-based Health Care, which will be sent to various research ethics committees.
“We have also been in touch with research ethics committees – to see what can be done from their side to increase awareness about the draft code," said Geiger
She added: “We are busy consolidating the research and intend to submit a paper to an academic journal. Also, we've already customised short presentations, which different team members can take and use to respond to requests.
“And the City of Cape Town has indicated its intention to post the draft code on its website as a guiding document for researchers who want to do research within their own ambit."
But Geiger stressed: “In terms of taking the draft code forward, we would like to open it. So people can take it and develop it for their own non-government organisation. For instance, people from the deaf community saw quite a lot that they still wanted to add or that they felt should have been expressed differently.
“We don't want to hold it tightly. People need to use the draft code as it best serves them. It is very much a conversation opener."
The project team, more ambitiously, wants the draft code to feed into government policy as well: “We are looking at taking it to provincial level, national and so forth. We need to get our head around how to manage the resources for that," said Geiger.
This project fits in well with Stellenbosch University's declaration of 2020 as the Year for Persons of Disability, and with the AfriNEAD (Africa Network for Evidence-to-Action in Disability) conference which the CDRS plans to host from 30 November to 3 December.
“We must make research more inclusive," Geiger stressed. “We all have something to gain from being more inclusive."
Photo credit: Damien Schumann