Biobanks host data fundamental to biological research and require governance to ensure that the results reach people across different countries equitably
The biotechnology economy or bioeconomy has seen exponential growth in market value with a greater understanding of genes and genetic modification, its impact on healthcare, and innovation in food security, bioproduction, etc. In July 2022, India released its Bioeconomy Report, which overviews the growth in the biotechnology sector and its different fields of operation, projecting a potential market value of US$300 billion by 2030. Union Minister Dr Jitendra Singh, who launched the report, highlighted the relevance of biotechnology for the Indian economy in the coming 25 years, quoting an increase in biotech start-ups from “50 to over 5,300 in the last ten years” and adding the potential for this number to “further increase two times, to 10,000 plus by 2025”. This growth indicates increased research, development, and industrial participation in bioeconomy.
The data for research and development (R&D) in the field of bioeconomy can be stored in three types of data centres: Biological Resource Centres (BRCs), Biorepositories, or Biobanks. While all three hold biological data, biobanks are usually preserved to maintain only human-based biological data (including blood, tumour growth, and DNA samples), reserving animal and environmental data for biorepositories and BRCs.
The data for research and development (R&D) in the field of bioeconomy can be stored in three types of data centres: Biological Resource Centres (BRCs), Biorepositories, or Biobanks.Biobanks collect data for addressing R&D of critical human diseases. Thus, biobanks can be of two types: Population-centric, that collects information from general population samples, and disease-centric, that gathers information based on a specific disease or genetic condition being researched. Another way of categorising biobanks is through the intention of research, including population biobanks, basic research biobanks, translational study biobanks, pathological study biobanks, and clinical trial biobanks. Thus, biobanks host data fundamental to health and biological research and require governance to ensure that the results from such research reach different populations across different countries equitably.
Data collection, storage, and sharing are precursors to misuse that also require governing and compliance.The lack of biobanks in the Global South results in an inequitable representation in health research, development, and deployment of health initiatives. The bias to research and funding for biobanks in the Global North results in research of genetic conditions and diseases that plague the Global North and are less beneficial to countries in the Global South. While some countries like China, South Africa, Mexico, and India are trying to develop biobanks, with want for increased funding for research and establishment, there remains a need for greater Global South representation. Further, there is a dissonance in results using samples from the Global South while catering to Global North health requirements. Additionally, due to the lack of explicit ‘return on results’ policies, the benefits of the data extrapolated from biobanks in the Global South are not shared equitably. This creates a distrust between the Global South biobanks, researchers, and organisations using biological data in the Global North. A similar outcome was observed during the SARS-Cov-19, with significant inequity between research sources and sharing vaccine manufacturing knowledge and deployment. Amid the pandemic in August 2021, the World Health Organization built the first global vaccine-manufacturing hub in Cape Town, collaborating with the South African government. However, private sector participants like Moderna and Pfizer’s desire to preserve their knowledge reduced the capacity of Afrigen (the biotech firm responsible for vaccine production built in Cape Town) to contribute to vaccine manufacturing. This continued the trend of Africa’s reliance on global vaccine manufacturing, with Africa manufacturing only 1 percent of the vaccines consumed within the continent.
Amid the pandemic in August 2021, the World Health Organization built the first global vaccine-manufacturing hub in Cape Town, collaborating with the South African government.To avoid these inequities in outcomes, the biobanking sector needs greater Global South participation in norm-building and global level governance integrating academic and medicinal research, government outreach, and private-sector involvement. Creating such global guidelines for biobanking will include the requirements of the Global South biobanks and health organisations and hold the Global North biobanks, health organisations, and researchers accountable to the sources of data used in their research.
Significant gaps in national standards and global compliance ignore the need for equitable data and benefit sharing, barriers to research, biopiracy, and private sector participation.However, these guidelines and databases are not enforceable and require the voluntary participation of countries and organisations. Further, significant gaps in national standards and global compliance ignore the need for equitable data and benefit sharing, barriers to research, biopiracy, and private sector participation. Global governance in this field needs to include the rights of participants, data sharing standards, addressing obstacles to data hosting and collection, and defining private sector participation in research and emergency.
India also has a global platform with its involvement in multilateral organisations like the Quadrilateral Alliance and the G20 presidency.India is taking the lead in advocating for global governance. Formulating such guidelines and establishing an overlooking authority will help address the dissonance between the Global South and Global North. In recent years, India has established itself as a global leader in healthcare with its participation in SARS-Cov-19 vaccine development, deployment, and diplomacy. Further, India, with its experience in the Global South dynamics for biobanking and history of exporting health information and data, can also contribute to the need to prioritise diseases that are relevant to the Global South, highlight the need to prevent biopiracy, and establish rules around benefit sharing to the Global South. India also has a global platform with its involvement in multilateral organisations like the Quadrilateral Alliance and the G20 presidency. India, with its association with the Quad, was able to increase its vaccine production and deployment to over 70 countries by 2022. Similarly, India has suggested the urgency of a Global Vaccine Research Collaborative, citing its vaccine diplomacy on the G20 platforms. With these platforms backing India’s outreach in global diplomacy, it can expand its national regulations to inspire and assist in creating a global governance structure for biobanking and data sharing, thus, providing relief to any lack of trust between researchers and biobanks, and creating mechanisms for benefit sharing and incentives for funding in the Global South. In conclusion, India spearheading this need for governance of biobanking, and representation of the Global South will promote advancement of scientific research, equitable healthcare, mutual benefit sharing, and address the unique healthcare challenges these regions face.
The views expressed above belong to the author(s). ORF research and analyses now available on Telegram! Click here to access our curated content — blogs, longforms and interviews.
Shravishtha Ajaykumar is Associate Fellow at the Centre for Security, Strategy and Technology. Her fields of research include geospatial technology, data privacy, cybersecurity, and strategic ...
Read More +
PREV
