For some researchers and students, this is just another form, more admin and more work to get through before being able to conduct the research work. To me, however, as a person of colour, an African and a woman (all demographics of which have been exploited in the past), ethical clearance is more than a piece of paper, it is a commitment to ensuring respect and dignity.
What is ethical clearance?
Ethical clearance is a requirement in research that concerns humans (living or human remains) as well as animals. Animal research ethics is put in place to ensure that there is no cruelty involved in the research process and that the research is conducted in a responsible way. Most universities have ethics committees which examine proposed research ideas and check that they are responsible, ethical, with minimal risk and result in sound scientific outcomes. Human research ethics can involve living people as well as human remains, both of which are important to many research fields.
An important factor in ethical research is informed consent, it is no longer acceptable to include people in studies who actually do not understand what it is they are consenting to, whether this is the collection of their genetic information or their responses to questions. It is not enough to simply get a signature on a piece of paper, now it is imperative that those who are signing are aware of the research methods involved and their participation.
Why am I ranting about ethics?
This year, researchers based at Stellenbosch University published a paper which ‘assessed the cognitive abilities of Coloured women’. There was uproar, with many people calling out the racial bias and undertones in the research paper and calling to question the validity of the science and methodologies (they were extremely flawed).
So why did it matter to me? Well, as a biological anthropologist, I acknowledge that race is not a biological concept, it is instead a political and social construct, but it has real implications (including biological) on those who are exposed to racism. Due to the Apartheid system, most of my family were classified as Coloured. Many people joke about how Coloured people are confused when Heritage Day rolls around, and that we have no culture or community of our own but we do; it may be young and it may incorporate elements from different cultures but that is who we are and we are a vibrant and dynamic community. Anyway, enough of the history lesson, but reading this article triggered me because it hit so close to home, by these researchers questioning the cognitive abilities of that group of women, they were questioning and indeed insulting mine. After reading the paper, I felt a mixture of emotions, sadness that we have not progressed beyond this, disappointment in the blatant bias and the lack of consideration and ultimately anger. I was angry for these women, for women like me to be portrayed in that light, to reduce our challenges and nuances, to reduce our abilities and to then tell the world we are less than.
Although the paper was later retracted and the University issued an apology this should serve as a reminder that we still have a lot of work to do and that self-reflection is desperately needed across academic spaces in South Africa.
What happens when there are no ethical considerations?
History has provided us with many examples of unethical research work and the implications not only for individuals but for our understanding of the human condition. In order to prevent this from recurring, we should recall these events as a lesson in ‘what never, ever ever, EVER, EVER to do’
The Tuskegee experiments
Between 1932 and 1972, the U.S. Public Health Service, working with the Tuskegee Institute in the USA, began a study to record the natural history of untreated syphilis. It was called the “Tuskegee Study of Untreated Syphilis in the Negro Male” (I CRINGE already). There was a total of 600 impoverished African American men enrolled in this study, of that number, 201 did not have the disease and 399 had previously contracted syphilis. The men were not told what was happening to them, only that they were receiving free health care from the government. None of the men was told that they had the disease, and none were given penicillin to treat it, even though it had been proven to be successful at this. In 1973 after hearings held by Congress surviving participants, along with the heirs of those who died, received a $10 million out-of-court settlement. Additionally, new guidelines were issued to protect human subjects in U.S. government-funded research projects.
World War 2 experiments on twins
Nazi doctor Josef Mengele was known as the ‘Angel of Death’ and from May 1943 until January 1945, he worked at Auschwitz, conducting pseudo-scientific medical experiments. Many of his cruel experiments were conducted on young twins. During his reign of terror, almost 3000 twins were pulled from the ramp in order to be experimented on, only 200 survived. Some of the experiments included mass blood transfusions, chemicals put into their eyes, mysterious injections that caused severe pain, spinal taps with no anaesthesia, injecting diseases such as typhus, various surgeries including organ removal, castration and amputation. These were usually performed on one twin and the other was used as a ‘control’. It did not end once the twins died, instead, autopsies were performed by Dr Miklos Nyiszli.
South African army experiments
Dr Aubrey Levin was a psychiatrist who worked in the South African Defence Force (SADF) where he earned the nickname ‘Dr Shock’ for his use of electroconvulsive shocks on homosexual conscripts under the guise of ‘curing’ them of their homosexuality. This method involved showing conscripts pornographic images of same-sex people and simultaneously shocking them with an electric current. He did this in the hopes that the patients would associate sexual attraction to the same sex with pain and ultimately not want to engage in that activity. This occurred predominantly from 1969 until his family fled the country and set up a base in Canada. In 2010, a male patient came forward and accused him of sexual assault, after the initial claim another 30 victims came forward alleging abuse. He was sentenced to only five years in prison and released after one although he has not been extradited back to South Africa to be persecuted for his human rights abuses.
There are many more examples of unethical research with potentially lethal and life-changing consequences.
The way forward
There has been much progress since these dark days including several international codes of ethics such as the Declaration of Helsinki, developed by the World Medical Association. This is a “statement of ethical principles for medical research involving human subjects, including research on identifiable human material and data.” Ethics committees and codes of conduct apply internationally as well as on a local level and each university has an independent ethics committee to ensure good practice.
In 2017 the San Code of Research Ethics was published and received (rightfully so) global attention. This was monumental as a group of Indigenous people (who have so often had their rights and autonomy violated, infringed upon and ultimately abused by the research community in the past) took back their voice and demanded to be treated as equals. The San people of Southern Africa have been studied for decades, everything from their diet to their genes and everything in between and often this was done without following ethical guidelines, simply because these were people who were viewed as nothing more than ‘Specimen X’ in research studies.
The Code was simple, it asked that the San people be treated with respect and dignity, something that should go without saying. The Code also requests that the community is involved in what is published about them, often researchers are guilty of not seeing individuals but instead data points and this lack of perspective and concern can lead to the publication of derogatory research.
This is of particular importance in Africa, where helicopter research is rife. For those who want to learn more, helicopter research typically describes when researchers from wealthier countries fly to developing countries, mostly in Asia and Africa, take whatever data they need with little to no local involvement and publish the results. Recently, researchers from Africa have called for more control on our genomic data in order to control for this helicopter research and ensure the growth and development of our own researchers as well as a correct interpretation of our people.
Some acts of mending the hurt include the repatriation of remains that were unethically and illegally collected. One of the most famous examples is that of Sara ‘Saartjie’ Baartman, who was paraded in Europe in order to demonstrate how racially superior Europeans were. After her death she was still treated with an astonishing indignity, a mould of her body was made, her skeleton, genitalia and brain preserved and displayed at the Museum of Mankind in Paris until 1974. Her remains were only returned to South Africa in 2002, some 200 years after she was ripped from her home and paraded as a sexual oddity. This practice of repatriation is still ongoing and should be a constant discussion point because science owes it to the people it has wronged to attempt to do what is right, what is fair and what is just.
Addressing the past ills of the research system is important in a South African context as we are healing from the scourge that was Apartheid. During this time many unethical studies were conducted mostly on Indigenous and Black peoples, this has left a legacy of (rightfully earned) distrust with the public. It is important that we recognise this horrific past, ACKNOWLEDGE IT and then try to rectify the wrongs. Although the current academic community may not have played a role in these past studies, the onus falls on us to ensure it never happens again.
The justification of unethical practices “in the name of scientific advancement” is not valid, it was never, and it should never be. As a community, we have an obligation to society to ensure that we do better because we know better.