In my course on anthropological genetics last semester, I spent a week on the ethical challenges with appropriate consent by research participants for the re-use of their DNA samples and data.
A case that made headlines that very week was the alleged misappropriation by the Wellcome Sanger Institute of DNA samples taken from South African research participants. The story revolved around the commercial use of data in development of a gene chip that used genetic markers that vary in Africans. South African participants had signed consent forms that expressly excluded commercial uses. In my course I was able to cover the extreme difficulty of separating commercial from noncommercial uses of DNA data, and the tangled connections of research institutes focusing on population history, those focusing on medical applications, and commercial enterprises that sell products to those laboratories.
Now, a great commentary by Keymanthri Moodley of Stellenbosch University adds some broader perspective to this story from a South African perspective: “Africa’s genetic material is still being misused”.
She reviews work that her team undertook several years ago looking at the reasons why people volunteer for genetic studies, and their expectations about the research.
Most participants were supportive of research. But many expressed concerns about export of their blood samples and data out of South Africa.
For their part, researchers viewed the biosamples as donations. But participants believed they had ownership rights and were keen on benefit sharing. Almost half of the participants were not in favour of broad consent delegated to a research ethics committee. Their preference was to be contacted again for consent in the future.
The legitimacy of using broad consent models for genomic research and biobanking occupies a contested space among bioethicists and researchers globally. Broad consent allows researchers to use biosamples and data indefinitely for future research.
There is much more in the article, including some recommendations for reform in the South African setting. She focuses on the need for real engagement with research participants, with “co-creation of knowledge production and benefit sharing”, as well as tiered consent as described in a recent paper by Victoria Nembaware and collaborators (including Moodley’s lab): “A framework for tiered informed consent for health genomic research in Africa”.
These recommendations should be examined closely by researchers in other contexts.