PRETORIA, SOUTH AFRICA — Criminalisation of HIV/AIDS transmission, a widespread phenomenon in Africa, is undermining efforts towards fighting the disease.

This emerged during the Science Forum South Africa (SFSA), attended by some 3,000 researchers, scientists, policymakers and students from all over the world. The forum, which ran from 12-14 December in Pretoria, is Africa’s premier science, technology and innovation event.

During a session dubbed: Who is Transmitting HIV in Our Community: Ethical, Legal and Social Implications of HIV Network Research? panellists noted that one-third of the estimated 72 countries that have criminalised HIV/AIDS transmission globally are in Africa.

Panellists discussed the ethical, legal and social implications of the design, conduct and use of results from transmission studies.

Panellist Farirai Mutenherwa, a PhD student in the School of Applied Human Sciences at South Africa’s University of KwaZulu-Natal, said criminalisation has many negative impacts. He said it discourages testing because people fear prosecution if discovered to live with the virus, a situation that exacerbates spread of HIV/AIDS.

Mutenherwa, whose study focuses on the ethical, legal and social implications of HIV molecular epidemiology, added that research studies’ data gleaned from unintended disclosures can also be used to harm certain groups.

“Use of research findings for political agenda should be shunned and care taken to avoid existing marginalization,” he warned.

Moreover, he added that, although HIV/AIDS researchers have to engage with communities from the outset, they face a challenge of how to effectively do it due to stigma which could be fuelled by criminalisation of transmission. “Confidentiality and dissemination of research findings should minimise harm on participants,” he stressed.

His views were echoed by Ann Strode, associate professor and academic leader at the School of Socio-Legal Studies, Pietermaritzburg, University of KwaZulu-Natal, who noted that studies indicate that widespread criminalisation of transmission pose challenges to HIV/Research in Africa and is an issue of concern.

Fear of Legal Action

She told Health Policy Watch that criminalisation of HIV virus transmission may deter people from volunteering to participate in research fearing that if found HIV positive and not to have disclosed their status to their sexual partners they maybe prosecuted.

Strode stressed that the criminal law in many African countries can act as a deterrent to people knowing their HIV status, for once one is aware that they are positive and fail to disclose their status or take precautions to protect their sexual partner, they may be committing an offence. “Thus researchers may need to advise participants of this fact,” she said.

Additionally, she said, people may not want to volunteer to be part of research if there is a possibility that researchers may have to report that they are, for instance, engaging in ‘risky behaviour’.

According to Avert, a United Kingdom-based organisation that provides education about HIV/AIDS, in 2017, HIV statistics indicated that the disease is still a global issue with an estimated 36.9 million people living with the virus.

The organisation noted that 66 percent of the 36.9 million live in sub-Saharan Africa, with 19.6 million of them in East and Southern Africa. The two regions, Avert showed, had a combined total of 800,000 new HIV infections in during 2017.

Statistics South Africa indicates that last year overall HIV prevalence rate was approximately 12.6 per cent of the country’s population, with total number of people living with HIV being estimated to be approximately 7.06 million.

Among adults aged 15-49 years, an estimated 18 percent of the population was estimated to be HIV positive [pdf] in South Africa.

Strode observed that there are numerous key ethical, legal and social issues that affect medical research and researchers, especially those doing research on HIV/AIDS in South Africa and Africa in general.

These, she explained, include aspects such as ensuring consent to research for sound decision-making, protecting the privacy rights of participants and ensuring that participants do not face social harm such as discrimination if they participate in research. HIV/AIDS researchers in Africa should ensure that all Africans benefit from scientific progress, she added.

Doug Wassenaar, a clinical psychologist and professor at the School of Applied Human Sciences, University of KwaZulu-Natal, said that given that some terms might not exist in local languages, researchers should simplify the language so that the communities concerned have a good grasp of the research for the sake of informed consent.

“Some languages may not even have an equivalent of the word research, making it hard to explain concepts to participants in a study,” said Wassenaar, who is also director of South African Research Ethics Training Initiative (SARETI).

He said technologies on HIV/AIDS detection and transmission are way ahead of ethical thinking, which he noted is merely trying to catch up, a situation that calls for understanding the concerns of scientist and ethicists.

A consultant to the HIV/AIDS Vaccine Ethics Group (HAVEG), Wassenaar said independent ethics committees’ members must have a grasp of local culture and an appreciation of scientific issues surrounding research in question to ensure participants and communities involved do not suffer any harm.

On her part, Strode said effective ways of addressing key ethical, legal and social issues that affect research and researchers on HIV/AIDS in Africa is through focus on awareness-raising and ensuring universities have courses dealing with the issues so that researchers are well prepared whenever they want to engage in grant writing.

Other measures that she highlighted were inter-country agreements on research contracts so as to ensure equity and development of good legal norms governing research and ethical codes which are binding on researchers.

Panellists noted that given that HIV transmission and incidence is still high in Sub-Saharan Africa, in-depth understanding of the transmission dynamics is important in guiding the interventions.

Mutenherwa, whose PhD study focuses on the ethical, legal and social implications of HIV molecular epidemiology, said one approach towards assessing transmission is to conduct phylogenetic analysis of viral data to identify the most likely transmitters of the virus and those most vulnerable to infection.

He noted that some of the ethical issues that arise out of studies on transmission are about collection, storage, analysis, and sharing of data. “In terms of sharing of data,” he noted, “there is a dilemma more in relation to data submitted to open publishing repository which could be prone to abuse.”

According to Mutenherwa, ethical principles to which researchers undertaking studies on transmission need to adhere include use of collaboration and partnership among various stakeholders involved in the research, focusing on the social value of the research, its scientific validity and fair participant selection.

He said researchers should ensure a favourable risk benefit ratio to participants and work with an independent ethics review. Others issues he highlighted were putting emphasis on informed consent and ongoing respect for patients/participants.

Ownership of Research 

Concerning allegations that research input from African medical researchers is being denied recognition in medical breakthroughs in which they jointly participate alongside western counterparts, Anne said the issue is a complex legal matter with various aspects.

She noted that it is very important that African researchers own their own intellectual property rights through their work belonging to their institutions or themselves.

“Unfortunately, this is often difficult to achieve as, if their work is funded from elsewhere, the funder may demand that they own the intellectual property. Funding contracts need to address this issue and advocacy is needed for law reform so that the state takes an interest in this issue and provides minimum standards around intellectual property,” she emphasised.

She said intellectual property ownership must be done in a carefully considered manner so that research funding is still obtainable and African researchers get the recognition they deserve.

Moreover, stated Strode, fair research contracting is also necessary to ensure contracts are negotiated in a manner that both parties – African research institutions and research institutions and funders from the North – benefit.

Image Credits: Justus Wanzala.