Page 128 - SAMRC Annual Report 2023-24

empower African researchers and data/biospecimen sections with a request for consent to that specific
generators to have oversight of modes and data use after each question, to avoid information
conditions for the onward sharing of the resources overload and confusion for participants.
they have generated. This platform will promote
more equitable benefit sharing and support better We have found this approach to be effective: whilst
sustainability models for resource generators in some participants don't wish to get into the details,
Africa and will help to ensure ethical re-use of these this modularised approach allows for more focused
resources by giving oversight of onward use to questions from participants, and they can select
those who generated them. As part of this project, the use cases they are comfortable with. So far, we
we have also published a guide to different types have found only one type of data use that is not
of data sharing to promote more equitable modes considered acceptable by all participants, and this
of sharing data where possible. Data-sharing modes is the use of genetic data for ancestry studies, which
such as collaborative sharing and federated analysis some participants do not agree to. We believe that
can promote capacity development for researchers the use of this tiered consent structure makes it more
who are willing to share their data using these modes possible to accurately understand the preferences
rather than direct sharing. of each participant.

Science for creating a In celebration of 30 years of
healthier society democracy in South Africa

In our work building a virtual genotyped cohort, As we reflect on 30 years of democracy in
funded by SAMRC/UKRI we have been inviting South Africa, the SAMRC-SANBI Bioinformatics
health care clients of the Western Cape Government Unit affirms its commitment to; addressing issues
Department of Health and Wellness (WCGHW) of inequality – there remain economic and social
to participate in the study. We have a tiered inequalities in our country. As a SAMRC Unit, we will
informed consent protocol which is implemented strive to create opportunities to ensure equitable
by our recruitment officer who is a trained genetic access to bioinformatics education and training and
counsellor. The protocol involves extensive promoting social inclusion and diversity.
discussion of eight different elements for which we
request individual consent. We have designed the We will continue to empower communities through
process to provide the information to participants in our research and development.

126 SAMRC ANNUAL REPOR T 2023-24