Skip to main content
Series
The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Disrupting the status quo: a new model for benefit sharing in genomics research, a case study from South Africa

Type
Conference

ELSIcon2022 • Paper • June 2, 2022

Erin Burke, Michèle Ramsay, June Fabian

Genetics researchers have earned the label “extractive biocolonialists” because they collect samples and fail to further engage with or compensate those who provided them. Though there has been progress away from this model, more recently, promises to participants of the broader benefits of genomic research and personalized medicine are not realized, especially for those from low and middle-income countries, minority or Indigenous groups. One way to ensure that groups receive tangible benefits is to design collaborations that include distribution of funds to communities in the short- and long-term. Specifically, Variant Bio, a genomics company, is transforming the way in which participants benefit from research by building a model whereby communities receive 10% of project budgets upon the conclusion of sample collection (short-term benefits) and 4% of revenue plus 4% of equity value if Variant is acquired or goes public (long-term benefits). These funds go to local initiatives that support capacity building, education, healthcare, or sustainable development. The benefit sharing plan is co-designed with communities through engagement with their nominated representatives, study scientists and Variant Bio to ensure their specific needs are met. Here, we present a case study of the benefit-sharing model deployed in a research collaboration between Wits University, Variant Bio, and the MRC/Wits Rural Public Health and Health Transitions Research Unit in Agincourt, South Africa to study the genomics of kidney disease. Compensating partner communities through benefit sharing is one way in which researchers can work towards co-designing ethically grounded, sustainable, culturally relevant partnerships in genetics research.

Tags

Keywords
Live
Paper
Recruiting diverse participants to precision medicine research
genomics research
Biobanks
equity and justice in genetics

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

Related Videos