The International Paralympic Committee (IPC) has made quite an impact in athletics during its relatively short lifespan. Since its formation in September 1989, it has developed the biennial Paralympic Games into one of the premier sports events in the world.
Now the IPC is once again venturing into new territory. In September 2019, the Bonn-based organisation decided to launch a Science and Research Working Group to protect and advance the interests of Paralympians off the sports field as well.
One of its members is Professor Keymanthri Moodley, Director of the Centre for Medical Ethics and Law at the Department of Medicine at Stellenbosch University's Faculty of Medicine and Health Sciences (FMHS). “It's a special working group of the IPC," she explains.
“It was developed because the IPC receives many requests – from academics and others – to conduct research on the athletes during Paralympic Games, and on the different types of sport that fall under the body."
The establishment of the nine-member Working Group was a logical progression from the original mission of the IPC – to give a voice to athletes with disabilities.
“The research [on Paralympians], as it stands, is unregulated," Moodley elaborates. “There was a need to submit research proposals to a particular committee comprising experts from different fields so that these could be reviewed just like research in any other field."
The Working Group is chaired by Dr Debra Alexander, extraordinary senior lecturer in Stellenbosch University's Department of Psychiatry since her retirement, and includes Prof Wayne Derman, Director of the university's Institute of Sport and Exercise Medicine.
“The Working Group needs to establish whether the research is necessary, relevant, scientifically robust and, of course, that it is conducted following international ethics guidelines."
This is where Moodley comes in. She has served on research ethics committees for many years, including on the National Health Research Ethics Council of South Africa and on the South African Medical Research Council's Research Ethics Committee.
In addition, she has participated in various international bodies and projects, including co-hosting a programme to develop capacity in health research ethics in Africa, which is run in collaboration with the Bioethics Centre at the University of North Carolina in the United States.
Another important consideration behind the formation of the Working Group, according to Moodley, is that the IPC wanted to introduce a system for research so that there would be a data base of the kind of research that was being conducted.
“That would not only avoid duplication of the same types of research, but also ensure that research that is being conducted is important to the Paralympic community," adds Moodley. “It's about formalising the process."
In addition, the Working Group has a key role to play after research has been conducted. “We want to know how it's going to be translated into information that is relevant to civil society, and how the results will be communicated to the participants in the project," says Moodley.
The Working Group will hold its first meeting in April 2020, followed by annual meetings of its members: “We will report to the IPC governing board on research priorities and strategy, and on the implications of the research for its decision making."
But the Paralympians themselves will remain at the centre of any research. “The individual athletes themselves still have to consent," Moodley stresses. “All the Working Group is doing is assessing the research application.
“And, of course, depending on where the researchers come from, their own institutions would also have had to provide research ethics approval for the project before they conduct their research." All the IPC is attempting to do, is put in place additional checks and balances.
The Working Group also envisages broader involvement of the Paralympic community in research. “Some level of community engagement is going to be important because any research needs to be accepted by the participant community," Moodley emphasises.
“And, of course, mechanisms must be put in place to ensure that there is information sharing before, during and after the study. There should be a comprehensive community engagement process."
Protection of data and private information is another important priority for the Working Group. In South Africa, for instance, research must comply with the Protection of Personal Information Act, and in the European Union with the General Data Protection Regulations.
Although the mandate of the Working Group is quite wide-ranging, and may present formidable challenges on top of the already demanding work schedules of its members, Moodley is clearly looking forward to her new role.
“The first thing we will look for is that the project is scientifically valid," she notes. “Because if it's not, then there is no point even looking for anything else; good research must be based on good science."
Moodley's appointment coincides with Stellenbosch University's declaration of 2020 as the Year for Persons of Disability to celebrate and complement the International Day for Persons with Disabilities in December.
Her participation in the new IPC Working Group will no doubt help to make a substantial contribution towards promoting and expanding the rights of disabled people, and in particular of those striving to excel on the sports field.