Respecting the dignity of research participants: Research ethics at the HSRC today

Summary

At the heart of the research conducted by the HSRC, is the humanity and wellbeing of research participants. This is in line with the broader research ethics framework in South Africa and internationally. The focus on protecting the marginalised and vulnerable, in particular, is for good reason. There is a long and varied history of the abuse of science to further the ends of one group of people at the expense of another and South Africa’s own research history is no exception. Andrea Teagle reports.

In 1939, an influential pamphlet titled The Educability of the South African Native was published in South Africa’s academic circles. It was one of a spate of controversial publications during the 1930s that sought to measure the relative intelligence of different races using psychometric testing methods that were gaining traction internationally on the back of racist ideologies.

Written by Dr Martin Lawrence Fick, the head of psychology at South Africa’s National Bureau of Educational and Social Research (NBESR), it summarised the results of several earlier psychometric test studies comparing black, Indian, coloured and white children, and it argued for the relative ineducability of “the South African Native”. The NBESR was one of the HSRC’s precursor organisations.

According to the historian Prof Saul Dubow, such research was of keen interest to a government seeking to sculpt a “scientific” backbone for segregation. Fick’s work, for example, was published with a foreword from Werner Eiselen, the government’s chief inspector of native education, who would go on to help conceptualise Bantu Education. Even at the time, claims made from such studies were widely contested: critics pointed to environmental factors that influence test scores, undermining claims of innate disparities between racial groups. Yet, as Dubow writes in his book, titled Illicit Union – Scientific Racism in Modern South Africa, the research remained a powerful tool for oppression.

Of greater significance than the results, was the way in which the mental testing objectified those whom it observed, sustaining the notion of essential differences between “us” and “them”, he writes. It also reinforced the view that moral and political issues could be solved on the basis of “impartial” and empirical science. “In general terms, [the research] legitimized the rights of whites to make decisions for and on behalf of Africans.”

Members of the HSRC's Research Ethics committee gather in October 2018. From left to right: Research ethics chairperson, Prof Theresa Rossouw, committee member Thobekile Zikhali (back row) and Khutso Sithole, the HSRC's
research ethics administrator.

Modern research ethics
The rights of all South Africans are enshrined in the constitution, which affirms everybody’s right to bodily and psychological integrity, and prohibits research without informed consent. In 2004, the National Health Act of 2003 promulgated legal safeguards for research participants, and brought about the establishment of the National Health Research Ethics Council (NHREC), an overarching entity mandated to oversee ethics in research for registered research ethics committees in South Africa, among other responsibilities.

Today, the HSRC’s Code of Research Ethics includes a principle of respect and protection, which states that research should preferably be undertaken with, and not merely on, the identified community.

In addition to the principle of respect and protection, HSRC researchers commit themselves to scientific and academic professionalism, accountability, and transparency and ensure that participants clearly understand the aims and implications of the research.

Before research can be undertaken, researchers must receive the green light from the HSRC’s Research Ethics Committee (REC), who review protocols to ensure they align with the 2015 Department of Health Ethics in Research Guidelines, and appropriate international codes. The HSRC’s REC is one of 49 ethics committees nationally registered with the NHREC.

Ongoing training of researchers and committee members is crucial, because, while they might well accept the principles guiding the ethics procedure, the need for ethical oversight is not always immediately apparent.

Initial scepticism
Prof Peter Cleaton-Jones, the first chairperson of the HSRC REC in 2002 and chairperson of the Wits REC (Medical) from 1985 to 2017, recalls the initial reactions of social scientists in the two institutions to the establishment of RECs.

Some social-science researchers did not like their projects examined by the RECs, in some cases because the examination was deemed to be against academic freedom, while others considered those examining the research project to be unsuitable.

However, Cleaton-Jones recalls that, with education, attitudes of the researchers shifted. Following a talk about the REC, attended by HSRC staff, “surprisingly, members of the audience spoke and said that they now know that the committee provides protection for researchers and for participants in projects,” he says.

Some of the early challenges of research ethics reflected teething problems in the national guidelines.

Assoc Prof Anne Pope, external deputy chairperson of the HSRC REC from 2006 to 2018, says, “The previous 2004 guidelines had a good clinical practice flavour which offended many social scientists.”

In 2015, the Department of Health added a chapter on social-science research outside of bio-ethics to the guidelines, which helped to make them more broadly applicable to different contexts within the social sciences.

“Since we have this guidance from the department, it’s easier for us,” says Khutso Sithole, the current HSRC REC administrator. “We know what we are doing, as an ethics officer or as an ethics committee.”

New challenges
The REC today faces the challenge of keeping abreast of new technologies and methodologies and their ethical implications. With the proliferation of online data, questions of consent become particularly pertinent and require careful consideration.

An increasing ethics challenge is the use of the internet to collect data, invasion of privacy through collecting data about a person -  including photographs - copyright of photographs and recordings and ownership of data and human biological specimens, says Cleaton-Jones.

Pope says, even when researchers endorse the underlying principles, in some instances they do not see the importance of informing the REC about new methodologies they wish to use like photovoice, a participatory research methodology in which participants take photos or film footage of their communities. “They assume that everyone knows about the methodology and get angry and defensive when what they perceive as ‘stupid questions’ are asked.”

One of the contemporary ethics applications in South Africa relates to HIV/Aids vaccine trials. According to the United Nations Joint Programme on HIV and Aids, participants should receive “state-of-the-art” HIV-prevention packages. However, in a recent study appearing in the Journal of Empirical Research on Human Research Ethics, Dr Zaynab Essack and Prof Douglas Wassenaar found that RECs are not always aware of the range of available preventative measures that should be offered in HIV-prevention trials. They recommend the establishment of more detailed guidelines and better oversight for vaccine trials.

The work of the RECs, and the ongoing debates about ethics applications, pays testament to how far South Africa has come from the days in which research participants were not afforded legal or ethical protection. But even comprehensive ethical guidelines cannot guarantee that these individuals are not treated unethically by unscrupulous researchers. As a state-funded institution, the HSRC has added obligations to maintain academic and research integrity and independence. This is done by creating a safe space to debate and question accepted views and broaden the moral imagination, rather than merely following established ethics guidelines.

“It will always be necessary to persuade people of the importance of conducting themselves ethically,” says Pope, adding wryly, “South Africa is in the habit of accepting that unethical is okay as long as you are not caught.”

Author: Andrea Teagle, HSRC science writer
ateagle@hsrc.ac.za

The HSCR REC: Khutso Sithole, administrator
ksithole@hsrc.ac.za

Additional sources and further reading
Articles, Exploitation of the vulnerable in research: Responses to lessons learnt in history and The evolution of research participant protections in South Africa, by Prof Ames Dhai in the South African Medical Journal

The online article, History of Psychometric Testing in South Africa, by The Histories Project