Why community consultation matters in genomic research benefit-sharing models
- Sarah LeBaron von Baeyer1,
- Rebecca Crocker2,
- Rindra Rakotoarivony3,
- Jean Freddy Ranaivoarisoa3,
- Germain Jules Spiral3,
- Stephane Castel1,
- Andrew Farnum1,
- Holly Vance1,
- Noah Collins4,
- Keolu Fox5,6 and
- Kaja Wasik1,6
- 1Variant Bio, Seattle, Washington 98109, USA;
- 2Cancer Center, University of Arizona, Tucson, Arizona 85721, USA;
- 3Department of Anthropobiology and Sustainable Development, University of Antananarivo, Antananarivo 101, Madagascar;
- 4Department of Anthropology, Princeton University, Princeton, New Jersey 08540, USA;
- 5Indigenous Futures Institute, University of California, San Diego, La Jolla, California 92093, USA;
- 6J. Craig Venter Research Institute, La Jolla, California 92037, USA
This extract was created in the absence of an abstract.
The importance of benefit sharing in genomic research
Despite increasing calls for benefit sharing to promote greater equity in human genomic research, established precedents across the private and public spheres are lacking. Moreover, the few existing models for benefit sharing with populations that participate in genomic research are largely limited to intangible or nonfinancial benefits, or to top-down initiatives that generally do not draw on direct input from participating populations. Here, we present a model of financial benefit sharing that goes hand in hand with other important benefits such as scientific capacity building and data sharing and in which the priorities and needs of participating communities are identified and used to steer funding decisions. By discussing the implementation of this collective-interest model in the context of an industry-funded genomic research project in Madagascar, we offer a practical example for how to institute community-driven distribution of financial benefits. Despite the challenges involved in this process, we believe that consulting communities around financial benefits serves to both increase equity in genomic research and support locally determined needs.
Using a collective financial benefit-sharing model driven by community input affords researchers a means to strengthen reciprocity by giving stakeholders who participate in genomic research a say in how financial benefits are invested, as opposed to relegating them to the passive role of merely receiving money borne from top-down expenditure decisions. In addition, this trust-building approach facilitates the disbursement of tangible, near-term benefits that more closely align with communities’ local knowledge and priorities. Moreover, this model has the potential to begin to redress some of the historical wrongs committed in genomic research, as well as its precursors in biomedical research, including breaches of privacy, misuse of data, lack of true informed consent, no sharing of results, and the absence of material and other benefits for research participants.
These ethical breaches have caused serious …
