Time to fix the global genomics inequity gap
By Public Policy Projects-
Global collaboration in genomics should ensure that the benefits of precision medicine, the identification of new therapeutic targets and better monitoring of diseases, are available to all. Yet there are huge inequities in genomic research, not just in terms of a lack of global diversity in publicly available data, but also in terms of the geographical location of research for instance. The success among states in the Global North should thus not equate to an assumption that the same achievements are present in states in the Global South. To ensure that genomics research is a truly global collaborative effort, it is vital to understand and address structural factors in genomics that perpetuate these inequities.
Global genomic efforts face three major barriers: perceptual, infrastructural, and regulatory. Maximising the true impact of a global genomic collaboration will be dependent upon appropriately addressing these barriers. Such efforts must not examine each barrier in isolation but rather as dependant one upon the other. Namely, “access and availability of genomic or molecular profiling, availability or eligibility for clinical trials and novel therapies, and timeliness of evidence-based funding approval can all cause inequality of access and treatment in patients within a country and between countries. ” Achieving equitable access to genomics requires widespread availability of information, data and profiling – this must be a central priority for policy makers.
There is an ongoing concern that collaborative research conducted in lower- and middle-income countries by partners in high-income countries, is not always of benefit to the people who participate in such research. Examples of this include the potential exploitation of African research participants and researchers. Common terms are for example ‘helicopter research’ and ‘safari science’. There is also a concern about ethics dumping, where researchers knowingly locate their research in countries with weaker regulation for no other reason than to avoid stricter rules elsewhere. Concerns about ethics dumping have also been raised in the context of African genomics research.
Classifying such limitations upon genomic participation as ‘perceptual barriers’ is born from the idea that although they may not be barriers that are consciously created, they place limitations upon the willingness of people and countries to participate in genomics research. This stems partly from the entrenched power dynamics in science, where colonialism continues to reverberate. This is reflected through major economies, predominately former colonial powers, dominating the advancement of scientific research and development and ultimately reaping the financial rewards; irrespective of scientific advancement occurring in former colonies. It is therefore essential for the field of genomics to “find a way to remove the inequalities promoted by modern science while making sure its huge potential benefits work for everyone. ”
If such perceptual barriers are not taken seriously, then the risk is that there is a disincentive for researchers in lower- and middle-income countries to share data or to participate meaningfully in the global genomics space. This can translate into active or silent forms of resistance, both of which may have the net effect of aggravating, not ameliorating, the global genomics inequity gap.
It is not a surprise that some institutions and organisations are better resourced than others. However, it is recognising such differences that the notion of infrastructural barriers aims to highlight. If states, regions, organisations, etc. do not have the core infrastructural support to enable them to compete on a global scale, then they are more vulnerable and open to exploitation than their competitors.
Disparities in resource impacts the ability of genomic organisations to collect, analyse, and translate data, but also the ability to regulate the processes which enables each of those steps. Proper regulation and oversight, along with robust legal and financial frameworks helps create an infrastructure of support for genomic research. Genomics England, for example, is made-up of committees and boards which address issues and discussions surrounding access, ethics, and data, in support of the scientific team. Such a system of support has enabled the UK to make major contributions to the field of genomics. Similarly, H3Africa has benefited from guidance issued by its various working groups, yet the absence of strong domestic regulation continues to be a barrier to the successful and ethical pursuit of African genomics research.
If the field of genomics is therefore going to propose a truly global initiative, it must account for such differences in infrastructure, ensuring that no one state, or institution is able to dominate and direct the narrative of a global effort.
Differing approaches to regulations could hamper efforts at creating a global genomics community. With the introduction of data protection legislation across the world, for example GDPR across the EU, and with more and less stringent laws regulating health research, there is now an increasingly complex legal landscape that forms the backdrop of genomic research. Regulatory barriers and the limitations they place upon their respective states and institutions must therefore be accounted for.
Several countries have introduced legislation that prevents the export of samples to other countries. For instance, the Zambian National Health Research Act of 2013 puts in place considerable restrictions for biobanking and data sharing, building at least in part on concerns about exploitation. Zambia is not alone: other countries such as India, China and Indonesia have also introduced regulatory approaches that restrict or prohibit sample export. In developing a global genomic network, it is vital to consider why some states are unwilling to participate.
The need to address issues surrounding the regulatory barriers is pressing, as states are growing increasingly protective of their population data. It is important to recognise that these concerns are not unique to countries in the Global South. In the United States for example, news platforms such as CBS have been reporting on the “national security threat” imposed by foreign states trying to gain access and collect the “personal data of Americans”. If the global genomic effort is truly going to be global, states need to participate in the collecting and sharing of genomic data, without creating an us versus them dynamic in the process.
What is the solution?
Acknowledging the barriers that prevent true global genomics collaboration is the first step to overcoming them. Making serious work of developing approaches to genomics research and data sharing that foster science equity is also crucial. By recognising the embedded inequalities in international collaborative research, and actively working to diminish their effect, it will be far easier to foster global solidarity in preparing for the next pandemic or health crisis. An inclusive and highly self-reflective conversation, which brings all parties to the table, is needed to foster confidence in a global genomic database.
This article was co-authored by Dr Jantina de Vries, Associate Professor in Bioethics, University of Cape Town, and Anna Dickinson, Policy Analyst, Public Policy Projects.
#PPP #PPPinsight #ACJInsight #globalgenomics #annadickinson
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