Table 3.
Benefits and potential beneficiaries
Benefit | Example(s) | Beneficiaries | Articles |
---|---|---|---|
Financial | Licensing fees, percentage of profits, annual fees, direct payments | State, pharmaceutical companies, general population, researchers | [24–27, 29, 32–35, 38, 40, 44–48, 50] |
Capacity building | Improvement of healthcare infrastructure (databases, physical infrastructure, research infrastructure), research staff training and development, technology transfer, and joint ventures | Public health facilities, research staff, research facilities, communities that utilize improved capacity | [24, 29, 35, 38–50] |
Treatment or Healthcare | Free medical service (medication or consultation), provision of vaccines, tests, drugs, and treatments, treatment for non-research-related conditions | Research participants, their families, communities | [24–26, 28, 30, 32, 33, 37, 38, 40, 45–48, 50] |
Improved understanding, knowledge or therapies | Improved understanding/new insights of disease processes and a potential for new therapeutic modalities | Whole of mankind, researchers, pharmaceutical industry, individuals, communities, and populations from which they are derived | [25, 32, 35, 38–40, 46–48, 50] |
Post study access | Provision of pharmaceutical and diagnostics products that emerge from the research, giving access to new genetic tests, access to interventions identified as beneficial or to other appropriate care or benefits at subsidized cost | Research participants/specimen donors and their communities | [24–26, 29, 33, 37, 40, 45, 47, 50] |
Return of results/findings | Provision of individual results (information about own health, incidental findings) or aggregate findings (general research results, study outcome) from the use of their samples | Specimen donors, their families/communities, research community | [26, 28, 33, 40, 45, 46] |
Intellectual property/royalties | Publication rights, royalties from intellectual property, recognition | Researchers, pharmaceutical industry | [39, 40, 42, 45, 48] |
Humanitarian efforts | Donation of percentage of profits/royalties for humanitarian efforts such as general education or health campaigns, community development projects (schools, clean water, roads), support mechanisms for destitute community members, insurance | Communities participating in biobanking | [24, 38, 40, 42, 50] |
Responsiveness to local needs | Diagnostic or therapeutic application of the research that are tailored to local health needs | Communities where samples are collected/research is conducted | [40, 48, 50] |
Jobs | Jobs and related economic activities generated by the research industry such as employment within research facilities and/or biobanks. Scientists and other cadre of staff | Local community members, local researchers and professionals | [24, 44] |
Compensation for costs | Reimbursement of individual’s time, inconvenience and expenses | Research participants/specimen donors | [38, 39] |
Counselling, screening services and testing | Genetic counselling, screening tests, free tests, regular health checks | Specimen donors, their families | [28, 45] |
Other benefits | Anything can be shared, as long as it is defined as a benefit by a substantial number of stakeholders. Even recognition of participants contribution and thanking them | Different stakeholders involved in biobanking | [24, 36, 38] |