Let’s get ETHICAL

 

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?

3Ethical 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).

 

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Sara “Saartjie” Baartman https://www.sahistory.org.za/people/sara-saartjie-baartman

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.

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The twins of Auschwitz

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.

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World War I electric shock therapy. Photo by Reeve041476 (CC by 2.0).n

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.

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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.

But still, (together) we rise

 

“You may write me down in history

With your bitter, twisted lies,

You may tread me in the very dirt

But still, like dust, I’ll rise.”- Maya Angelou

When my editor approached us about writing a post for Women’s month, I was caught off guard surprisingly. What would I speak about? It is difficult to write about topics that are close to your heart, sometimes they are triggers, sometimes they get you fired up, sometimes they make you cynical about the world. That was the dilemma I found myself in, there is so much to discuss being a woman, not just in STEM but generally in life, there are so many challenges but at the same time there are so many successes, so much inspiration and ultimately so much resilience.

In a world that is truly designed for men (I mean that in the most literal sense, check out this article by the BBC and this article in The Guardian and prepare to be SHOOK!) it may seem like a constant uphill to carve a space for women. One thing that has helped us, though is our ability to come together and to build communities and support systems. The strength that comes from women uniting for a common cause is something that is truly awe-inspiring, it reminds me of a video I once watched of Army Ants who had held onto each other tightly to form a raft to survive a flood in the Amazon jungle. I use this analogy for a number of reasons, 1) people often think ants are small and insignificant however they are pretty incredible, 2) people underestimate how smart they are and 3) they are strong in numbers, just like the women in science that I know. The world has tried to crush them, but they have prevailed, the system has tried to force them out but they have stood strong.

They continue to rise, like dust

Fire ant raft
Fine ant raft

So, the purpose of my women’s month post is to highlight my own support structure and some of the incredible global initiatives that have provided a space for women to talk, connect, vent, draw strength and reflect on the past, present and future. These organizations are doing the important work of uniting women from all walks of life and providing them with a shared safe space in order to foster much-needed conversations but make no mistake, they are not all talk!

South African Young Academy of Science (SAYAS)

Although SAYAS is a platform for PhD candidates (not only women) this year was a special one because the entire team of bloggers and our editor all happen to be women! I have learnt so much from Joyful, Sesetu, Munira and Roula and I am grateful for our meme sharing, motivation and support of each other. Ladies, we have had a beautiful year together and I cannot wait to watch you all dominate your respective fields, it has been a complete privilege to share a platform with you. I look forward to hearing the future voices on here talking about the groundwork we once laid!

Black Women in Science South Africa (BWIS)

2019 has clearly been a fantastic year for me! I am also very honoured and privileged to have been selected as a 2019 BWIS Fellow. Black Women In Science (BWIS) is a registered NPC which aims to deliver capacity development interventions that target young black women scientists and researchers. Black Women In Science develops professional research and science conduct, leadership and mentorship skills for women within all scientific disciplines, in tertiary intuitions and professional environments nationally and internationally. The organisation was founded in 2015 by Ndoni Mcunu (CEO), google her, she is so incredible and there are far too many accomplishments to list!

Women in STEMI

This organization serves as a platform for telling the stories of emerging women in science. The forward was written by one of my icons in science, Prof Himla Soodyall and if this quote doesn’t make your arm hairs stand on edge then I do not know! “As I read through this collection of young women’s stories, marvelling at how their journeys through life have brought them to their current destinations, I am struck by a common theme that emerges through them. It’s a theme linked with sacrifice and passion to overcome challenges and a compelling drive to achieve one’s best, but at the same time to give back to society.” – Prof Himla Soodyall

Umsuka team Lindsay Hunter
Umsuka team – Lindsay Hunter

Association of South African Women in Science and Engineering

The Association of South African Women in Science and Engineering (SA WISE) is a dynamic association for all those who support the idea of strengthening the role of women in science and engineering in South Africa. The website contains profiles, information about funding and links to other important resources. One to keep tabs on.

Inspiring Fifty

InspiringFifty is a non-profit that aims to increase diversity in tech by making female role models in tech more visible. The organization releases an annual call for nominations of inspirational women so keep an eye on their webpage and make sure to nominate the women in your life!

One Million Women in STEM

1MWIS (1 million women in STEM) is a campaign seeking to profile a million women working in STEM disciplines to provide visible role models for the next generation of girls. There is now a significant amount of research showing that visible female role models serve to increase the number of girls pursuing STEM subjects in higher education and of those role models, real women (over celebrities, historical figures etc.) have the most influence.  To date, they have highlighted the work of over 300 women from different fields who are challenging the status quo and driving change. You can follow them on Twitter at @MillionStem

Women in Bioanthro workshop 2018
Women in Bioanthro workshop 2018

500 Women Scientists

500 Women Scientists is a grassroots organization started in America but now has a global network of local ‘pods’ to build communities and foster real change that comes. Local pods allow for a personal experience where members can meet often and in-person in order to exchange ideas. The pods focus on issues that resonate in their local communities but rooted in the larger 500 Women Scientists mission and values.

Quote this Woman+

In South Africa, less than 20% of sources quoted in the news are women and this online database of professionals seeks to change this by providing a resource for local and international journalists who are looking for comments! You can add your name to the database as an expert in your respective field.

In 2018 I was fortunate enough to publish an article through The Female Scientist (I am sure you know about this platform by now because I mention it all the time in my posts) on my experiences as a woman of colour in academia (I cannot speak to everyone’s experience- only my own) titled ‘Ebony in an Ivory Tower’ and my view on the position of women in STEM then was quite bleak. Today,  although the challenges I mention in the article are still ever-present, I am more optimistic because I have met with women, spoken to women and been comforted by women who have fought alongside me, for me at my weakest and against me at my most cynical. That is the beauty of the life raft we have created together, it keeps us afloat, but it helps us to realise that it is always darkest before the dawn.

The article I had written ended like this: “We need our voices to bellow through the ivory tower, until the vibrations of our collective pain, anguish, and ultimately hope, rattle the foundations and bring it to the ground. Because we love a science field that never loved us and instead of hiding in the shadows of this unhealthy power dynamic, we stand in the sun and demand a day when science acknowledges who we are.”

Ladies, thank you for standing in the sun with me.