"Harnessing genomics to improve health in Africa" – an executive course to support genomics policy

Creating a Platform for Ongoing Dialogue and Advocacy

The course generated a great deal of enthusiasm and vigorous discussion, and there was consensus among the participants on the need to create a mechanism for capitalizing on this momentum. Course participants and faculty therefore established an e-mail-based network, the African Genome Policy Forum (AGPF), to allow the continued exchange of ideas and the building of consensus on issues related to genomics and public health policy. The group, composed of participants from areas of government, academia, civil society and the media, was created to bring to the table the views of their respective constituencies, and inform their peers of insights gained from the course and through the network. The network may also play an advocacy role in promoting the responsible use of genomics as a tool to improve health and promote development in Africa.

Mobilizing Political Support

The success of any major initiative requires sustained dialogue with politicians. It is important to take the time to address their legitimate concerns, by clarifying the specific relevance of genomics and its applicability within the context of their communities. A point of particular relevance is the link between technologies like genomics and Africa's development, which has been well described in a number of recent reports [e.g. [6, 10]]. Participants highlighted the importance of taking back to their colleagues in their respective countries and institutions the lessons drawn from the course; those participants in public office agreed to seize opportunities to raise some of issues and proposals of the course when attending relevant forums. In particular, the nascent New Partnership for Africa's Development, adopted in 2001 under the mandate of the Organisation of African Unity, was repeatedly pointed to as an opportunity to bring genomics and its relevance to health in Africa onto the political agenda. Science and technology is among NEPAD's seven priority areas; another is human development, which encompasses health [11]. Genomics provides a clear example of how these two areas – science and technology, and health – come together, and can serve as a model for considering how science and technology and health concerns can be better integrated to address the continent's economic and health needs.

Prioritizing Needs

Participants agreed on the need to consider emerging technologies like genomics in light of Africa's specific health challenges, and consequently on the importance of prioritizing these and identifying strategic entry points. Infectious (including sexually transmitted) diseases, genetic and other non-communicable disorders, sanitation, nutrition, environmental pollution and loss of biodiversity were all proposed as areas requiring concerted attention, with a special emphasis on the potential for using genomics-related biotechnology to target the three biggest killers in Africa: malaria, HIV/AIDS and tuberculosis. There are already well-known African-led initiatives to apply scientific innovation to combat important health concerns, such as the Multilateral Initiative on Malaria, and the African Malaria Vaccine Testing Network (AMVTN). It will be important to build on existing success stories, and to identify gaps in terms of priority health areas receiving inadequate attention. This will help to focus efforts and to more efficiently channel limited resource, both financial and human. A regional approach, which has since been adopted by NEPAD, was proposed as a promising mechanism for harnessing existing competence to address local needs.

Capacity Building & Public Engagement

For several years, genomics has been linked with a number of high-profile, intensely controversial issues like human cloning and genetically modified organisms. While emerging technologies like genomics raise a number of important ethical and social issues that deserve careful consideration [12], a nuanced message takes account of the possibilities as well as the challenges of new approaches. Often, technological applications can complement existing, well-established health approaches [13]. Scientists, policy-makers, and the media have an important part to play in publicizing science, and pointing out its relevance to Africans in a moderate rather than hyperbolic tone [14]. Local leaders can have an important role to play, not only in reflecting the leading-edge opinions of their different constituencies to policymakers, but also by playing a role in raising awareness within their communities. A more informed public is often a more engaged public, which can effectively advocate for the development of policies that reflect legitimate concerns, while leaving space to explore promising avenues of scientific endeavour.

Public engagement was seen to form part of a long-term strategy for capacity building, and raising the overall profile of science and technology in Africa. The discussions reflected a conception of capacity strengthening as intimately linked with quality education – at all levels, and across disciplines. Core to this debate among course participants was the belief that endogenous capacity must be developed in order that Africa can begin to be self-sufficient, and itself become an innovator. Participants identified the following categories as needing attention:

Partnerships

Along with the need to strengthen the R&D base in science and technology, participants of the course identified a related need to increase the emphasis on commercialization – not only as a tool for sparking innovation but also to permit the generation of capital necessary to sustain the industry. An important step in the process of moving toward commercialization is the forming of alliances within countries, between universities and industry, sometimes known as "cross-linking". The fruitfulness of the Africa course, where people from across sectors and sub-regions came together with a common mission, re-enforced the value and the importance of establishing cross-sectoral networks and collaborations. Networks provide a means of generating new ideas, pooling the creative energies of individuals, and exchanging advice and expertise around a particular area of focus, in this case genomics and health policy. Such networks could play an advocacy role, combining the voices and the influence of key players from diverse disciplines and sectors, to advance a common aim. Collaborations, at the level of institutions – both within and between countries and regions – would facilitate the transfer of both knowledge and technology. During the course, it was pointed out that there is a particular need to encourage linkages between universities and industry to, among other things, facilitate the move from research and development to product generation and commercialization. This could include mechanisms to facilitate relationships between universities undertaking research in biotechnology and local industries. Institutional partnerships and collaborations at all levels, including internationally, can mean the channelling of resources to common areas of focus, and pooling the relative strengths and resources of partner institutions [15]. Such collaborations require very clearly defined roles for partners, and transparency with respect to goals, prioritization of needs, funding, and mechanisms to ensure equitable access to products.

Creating sustainable financing mechanisms

Ensuring that the benefits of science and technology, including emerging fields like genomics, requires a long-term strategy for sustained investment.

Research and Development (R&D)

With respect to R&D, there are already areas of strength on the continent; it is crucial to identify localized expertise, and to establish linkages with centres elsewhere in the region, as well as abroad, to ensure the transfer of knowledge and of technology, and to facilitate human resource development. Infrastructure must be developed to attract qualified African researchers to remain in or to return to Africa – both to support them, technically, intellectually, and socially and to provide them with similar opportunities for creativity and growth as may be found in other locales. The Biosciences Facility, established in 2003 by NEPAD, takes up this challenge, promoting "scientific excellence by bringing together a critical mass of scientists drawn from national, regional and international institutions in state-of-the-art facilities where they can undertake cutting-edge research to help solve the most important development constraints faced by the poor in Africa" [9]. While the new Biosciences Facility is the first of network of centres of excellent focused primarily on using science to help poor farmers, it may be an appropriate model for like initiatives using a regional approach for targeting health challenges.

Analysis

The course on Genomics and Public Health Policy in Africa was carefully designed, with inputs from both its Canadian and African co-organizers, to have a programme and participant profile reflecting the inter-disciplinarity of the issue being considered. Genomics cuts across S&T, environmental, development, industrial, education and health policy and generates important ethical, legal and social issues. It therefore requires a genuinely participatory and multi-stakeholder approach, as well as frank discussions about both the potential promise and perils of a relatively new science.

The strength of the course, as reflected in the evaluations submitted by participants, was the rare opportunity for discussion and networking among opinion leaders from different sectors. Both during and between sessions, participants exchanged perspectives and experiences with others from different regions of the content, and from different disciplines. Senior political officials, journalists, academics, and civil society representatives worked together in Study Teams to create proposals. Discussions were lively and open, with broad participation from those in attendance. However, a weakness of the course was the absence of industry representatives, who would certainly have contributed an important and valuable point of view. The small number of women participants was also a notable disadvantage. Later courses modelled on the Nairobi offering (i.e. those in Latin America, the Eastern Mediterranean, and India) had greater success in drawing participants from industry and obtaining a better gender balance. Notably, however, the recommendations that emerged from these courses, while reflecting differences due to regional priorities and context, did not vary considerably despite the broader contribution, particularly from the private sector [20].

A major outcome of the Nairobi course, and one which had strong support from participants, was the creation of a virtual network to facilitate ongoing interaction and discussion. Within two weeks of its completion, a website was created for the course http://www.utoronto.ca/jcb/genomics/html/ACTS_main.htm, as well as a web-based discussion board. While there was some initial activity on the discussion board, this eventually subsided, and was soon evident that this approach had failed. In an effort to revive the momentum and to solicit ideas from AGPF members about how to best move forward with the network, a short survey was sent to members asking what their needs were, both in terms of the network as well as in terms of the technical facilities at their disposal. The response rate was extremely low; however, those who provided feedback confirmed what the participation level suggested: namely, that information technology facilities in Africa are such that very few individuals, outside of some well-equipped academic or private institutions, have regular access to the internet. The web-based discussion board was, therefore, in practice a highly unsustainable option for the majority of participants. The point was also raised that it was not enough to be connected electronically; there was also a need to share a more tangible goal or project, and to have a more visible leader from within the group, to galvanize efforts and motivate continued interaction. One respondent explained that finding the time to contribute to such networks is extraordinarily difficult for many Africans, who often "wear many hats". As a result, a general interest was insufficient to justify diverting time from other tasks; a concrete, realizable goal was essential for engaging individuals who already feel over-stretched. As a consequence of these inputs, an email-based forum was established, since most AGPF members have better access to email than to the internet, and a moderator was temporarily appointed over the group. Activity on the forum improved and continues today, more than two years later, though interventions are irregular and generally extend to the sharing of information or material of interest, rather than discussions about issues.

The India course on Genomics and Public Health Policy was held in January 2003, less than one year after the inaugural Nairobi effort. Based on feedback from the previous course, the questionnaire requesting feedback about participants' technical and substantive needs in relation to the creation of a network was distributed during the course, to permit the creation of a network that was much more responsive to the needs of the participants. Moderators from among the participants were nominated before the course' end and their roles clarified, to facilitate the sustainability and autonomy of the network.

Later in 2003, two further courses were held in Oman and in Venezuela, both of which added a further element demonstrating the learning from the first two courses. On both occasions, the Joint Centre for Bioethics collaborated with the Regional Offices of the World Health Organization; in the first instance, with the Eastern Mediterranean office (EMRO) and in the second, with the Pan-American Health Organization (PAHO). This collaboration ensured that the recommendations of each course had an institutional structure through which they could be channelled, to reach the ear of decision-makers. EMRO and PAHO have extensive links with ministries of health within their regions, as well as with representatives from civil society and industry. This provided an opportunity for the results of the course to have a much wider impact. By contract, the impact of the Nairobi course is very much linked to the efforts of individual participants to engage with their constituencies and with the NEPAD initiative, of which one of their members is now a senior actor. The Forum developed following the Nairobi course has not provided a framework to drive action the way it was initially intended; however, it continues to provide a portal for information-sharing and dialogue.

Final Remarks

The executive course on Genomics and Public Health Policy in Africa was the first of its kind to be held on the continent. The response of participants indicated a tremendous enthusiasm for and interest in discussing the emerging technology of genomics and its applications for addressing the health woes of Africans. The sessions covered a spectrum of topics, from basic science, to ethics, business models and international frameworks – exemplifying the range of intersecting issues relevant to informed discussions about genomics and related policy. The course also was a demonstration of the fruitfulness of a multi-stakeholder approach. An important aim of the course was to encourage network-building and the development of meaningful interactions, as a foundation for sustained dialogue among opinion leaders. Participants were encouraged to develop independent proposals in a collaborative environment, rather than to be passive recipients of "expertise" from the session leaders. The result was a series of concrete proposals for action, and the establishment of an e-network to provide a forum for ongoing communication, discussion and elaboration of the issues and proposals raised during the course. Several participants agreed to raise the proposals and themes articulated to their colleagues; the course also generated some publicity, as journalists invited to attend and to participate actively in the meeting reported on the key issues in various media [[16, 17]; see also [18]].

Since the completion of this course, three more offerings have taken place, one in India in collaboration with the Indian Council for Medical Research (ICMR) in January 2003, another in Oman in August 2003, and a third in Venezuela in 2004. A fourth course is being planned for a venue in South-east Asia. The Nairobi offering demonstrated clearly the receptiveness of African researchers and policy makers to such an initiative, and captured the vision of a cross-section of stakeholders around how to ensure that the new wave of scientific promise does not pass them by, or crush them in its wake, but instead is harnessed for better health and to further economic development in their region [19]. The courses in India and Oman similarly gave rise to regional e-networks [20], which may eventually be connected to form an inter-regional forum for dialogue to form a basis for the sharing of experiences and expertise across regions in the developing world. Each of the three executive course held to-date has addressed similar themes in relation to genomics and health; but each has also been adapted to the particular context and interests of the host country or region. This has partly been achieved through active collaboration between the Joint Centre for Bioethics and the host institutions. The electronic networks provide a means of generating a long-term impact, driven by participants who are empowered, in their particular capacities, to take forward the ideas shared and the proposals developed through their interaction. The Nairobi course also highlighted the importance of being proactive in soliciting suggestions from participants about creative means of virtual networking that realistically address the poor information technology infrastructure in most parts of Africa. It also was instructive in demonstrating that a network is not itself self-sustaining; it must be driven by a clear, shared vision among participants, and possibly even a concrete and realizable project. Moreover, ideally a moderator from within the group should take leadership in feeding the forum, and motivating ongoing participation.

The New Partnership for Africa's Development (NEPAD) has made science and technology (including genomics and biotechnology) a key platform in its plan for economic renewal [2, 9]. Indeed, the recommendations outlined above overlap considerably with those described in a recent document detailing the resolutions of the first science and technology workshop of NEPAD, held in February 2003 [2]. The recent establishment of the African Biosciences Facility as a centre of scientific and technological excellence in the region, is further evidence that the recommendations articulated by the AGPF reflect a more widely shared vision. There is a growing recognition in Africa, and internationally, of the role that genomics and biotechnology can play, not only in alleviating health scourges of the poor, but also in addressing some of their economic concerns. With appropriate emphasis on its health needs, incentives for meaningful partnerships, sound regulatory structures, innovation and foresight, Africa could be in a position to benefit from genomics and related fields of biotechnology. The Course and Genomics and Health Policy in Africa had as its overarching goal that of bringing together a vibrant cross-section of individuals to foster dialogue around this timely issue. The African Genome Policy Forum works to build on this foundation, to sustain the momentum of the course, and to fulfill some of the participants' proposed goals. Perhaps most significantly, this series of courses represents a practical and effective mechanism for drawing together a variety of actors to address an issue of recognized import, which deserves a truly inter-disciplinary approach. Moreover, it is an initiative that generates important debate, but which is ultimately focused around generating concrete proposals to inform policymaking.