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The use of race in biomedical research has, for decades, been a source of social controversy. However, recent events, such as the adoption of racially targeted pharmaceuticals, have raised the profile of the race issue. In addition, we are entering an era in which genomic research is increasingly focused on the nature and extent of human genetic variation, often examined by population, which leads to heightened potential for misunderstandings or misuse of terms concerning genetic variation and race. Here, we draw together the perspectives of participants in a recent interdisciplinary workshop on ancestry and health in medicine in order to explore the use of race in research issue from the vantage point of a variety of disciplines. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action, including restrictions resulting from commercial or regulatory considerations, the difficulty in presenting precise terminology in the media, and drifting or ambiguous definitions of key terms.

Genomics, the comprehensive examination of an organism's entire set of genes and their interactions, will have a major impact on the way disease is diagnosed, prevented and treated in the new millennium. Despite the tremendous potential it holds for improving global health, genomics challenges policy-makers to ensure that its benefits are harnessed equitably across populations and nations. The classification of genomics as a global public good and the inequity encountered in the development and application of genomics knowledge are outlined in this paper. We examine the effect of the current patent system on the distribution of costs and benefits relating to genomics knowledge between countries of different economic strength. The global public goods concept provides a normative economic rationale for the modification of certain aspects of the current patent system and for the creation of complementary mechanisms to respond to the health needs of low-income and middle-income countries.

Schizophrenia, depression, epilepsy, dementia, alcohol dependence and other mental, neurological and substance-use (MNS) disorders constitute 13% of the global burden of disease (Table 1), surpassing both cardiovascular disease and cancer [...]

Abstract Background The case of Bacillus thuringiensis (Bt) maize in Egypt presents a unique perspective on the role of trust in agricultural biotechnology (agbiotech) public-private partnerships (PPPs). This is especially relevant given the recent pro-democracy uprisings that spread throughout the Arab world that have significantly impacted the current political climate and status of both the public and private sector, and especially public-private collaborative initiatives. This case study aims to shed light on various trust-building practices adopted, and trust-related challenges faced, in the Bt maize project in Egypt. Methods We reviewed published materials on Bt maize in Egypt and collected data through direct observations and semi-structured, face-to-face interviews with stakeholders of the Bt maize project in Egypt. Data from the interviews were analyzed based on emergent themes to create a comprehensive narrative on how trust is understood and built among the partners and with the community. Results We have distilled five key lessons from this case study. First, it is important to have transparent interactions and clearly defined project priorities, roles and responsibilities among core partners. Second, partners need to engage farmers by using proven-effective, hands-on approaches as a means for farmers to build trust in the technology. Third, positive interactions with the technology are important; increased yields and secure income attributable to the seed will facilitate trust. Fourth, there is a need for improved communication strategies and appropriate media response to obviate unwarranted public perceptions of the project. Finally, the political context cannot be ignored; there is a need to establish trust in both the public and private sector as a means to secure the future of agbiotech PPPs in Egypt. Conclusions Most important to the case of Egypt is the effect of the current political climate on project success. There is reason to believe that the current political situation will dictate the ability of public institutions and private corporations to engage in trusting partnerships.

Abstract Background In 1999, South Africa became the first African country to approve commercial production of subsistence genetically modified (GM) maize. The introduction of GM crop technology is often met with skepticism by stakeholders including farmers. The involvement of the private sector in this process can further breed mistrust or misperceptions. To examine these issues more closely, the objective of this case study was to understand the role of trust in the public-private partnership (PPP) arrangement involved in the development of Bacillus thuringiensis (Bt) maize in South Africa. Methods We conducted semi-structured, face-to-face interviews to obtain stakeholders’ understanding of trust in general as well as in the context of agricultural biotechnology (agbiotech) PPPs. A thematic analysis of the interview transcripts, documents, reports and research articles was conducted to generate insights into the challenges to, and practices for, building trust among the partners and with the public. Results The findings of this study are organized into four main lessons on trust building. First, as the end users of GM technology, farmers must be engaged from the start of the project through field demonstrations and educational activities. Second, an effective technology (i.e., the seed) is key to the success of an agbiotech PPP. Third, open communication and full disclosure between private sector companies and government regulatory bodies will build trust and facilitate the regulatory processes. Fourth, enforcing good agronomic practices, including appropriate management of the refuge areas, will serve the interests of both the farmers and the seed companies. Conclusions Trust has proven to be a critical factor determining the success of the Bt maize project in South Africa. Distrust of the private sector and of GM technology were cited as major barriers to building trust. The trust-building practices described in this case study have often served to overcome these barriers; however, erosion of trust was also present. The success of the project has been, and will continue to be, dependent upon the concerted effort of the farmers, government, and private sector players in the establishment and maintenance of trust.

Abstract Background Agricultural biotechnology public-private partnerships (PPPs) have been recognized as having great potential in improving agricultural productivity and increasing food production in sub-Saharan Africa. However, there is much public skepticism about the use of GM (genetically modified) crops and suspicion about private sector involvement in agbiotech projects. This case study sought to understand the role of trust in the Bacillus thuringiensis (Bt) cotton in Burkina Faso project by exploring practices and challenges associated with trust-building, and determining what makes these practices effective from the perspective of multiple stakeholders. Methods We conducted semi-structured, face-to-face interviews to obtain stakeholders’ understanding of trust in general as well as in the context of agbiotech PPPs. Relevant documents and articles were analyzed to generate descriptions of how trust was operationalized in this evolving agbiotech PPP. Data was analyzed based on emergent themes to create a comprehensive narrative on how trust is understood and built among the partners and with the community. Results We derived four key lessons from our findings. First, strong collaboration between research, industry and farmers greatly contributes to both the success of, and fostering of trust in, the partnership. Second, this case study also revealed the important, though often unrecognized, role of researchers as players in the communication strategy of the project. Third, effective and comprehensive communication takes into account issues such as illiteracy and diversity. Fourth, follow-up at the field level and the need for a multifaceted communications strategy is important for helping push the project forward. Conclusions Burkina Faso’s well-established and effective cotton selling system laid the foundation for the implementation of the Bt cotton project – particularly, the strong dialogue and the receptivity to collaboration. Interviewees reported that establishing and maintaining trust among partners, researchers and the community in Burkina Faso greatly contributed to the success of the PPP. By addressing challenges to building trust and engaging in trust-building practices early on, improvements in the effectiveness of agbiotech PPPs are likely.

Abstract Background Virus Resistant Cassava for Africa (VIRCA) is an agricultural biotechnology public-private partnership (PPP) comprising the Donald Danforth Plant Sciences Center (DDPSC), National Agricultural Research Organization (NARO) of Uganda and Kenya Agricultural Research Institute (KARI). The project seeks to develop virus-resistant cassava for farmers in Kenya and Uganda. Yet, there is much public skepticism about the use of genetically modified (GM) crops and private sector involvement in Africa. This case study sought to understand the role of trust in the VIRCA partnership. Methods We conducted semi-structured, face-to-face interviews to obtain stakeholders’ views on the challenges to, and practices for, building trust in the VIRCA partnership. Interviewee responses, together with relevant documents and articles, were analyzed to generate descriptions of how trust is operationalized in this evolving agbiotech PPP. Data were analyzed based on recurring and emergent themes from the interviewee responses. Results Various factors undermine and build trust in agbiotech PPPs. Individual and institutional enthusiasm and detailed collaborative agreements stipulating partner roles and responsibilities are likely to enhance trust among partners. On the other hand, negative perceptions propagated by international partners about the capacities of African institutions and scientists, coupled with slow regulatory processes in Africa, are likely to be impediments to trust building. Conclusions Based on the findings of this study, we have derived four key lessons. First, differences in the capacity of the partner institutions and individuals should be respected. Second, technical and infrastructural capacity support for regulatory processes in Africa must be built. Third, detailed agreements and open and transparent partner practices during project implementation are necessary to dispel perceptions of inequality among partners. Fourth, institutional and individual commitment to succeed is important in initiation of the project. These lessons can be used by other agbiotech PPPs as a guide for building trust among partners and with the community.

Abstract Background The Bacillus thuringiensis (Bt) cotton public-private partnership (PPP) project in East Africa was designed to gather baseline data on the effect of Bt cotton on biodiversity and the possibility of gene flow to wild cotton varieties. The results of the project are intended to be useful for Kenya, Uganda, and Tanzania when applying for biosafety approvals. Using the backdrop of the different biosafety regulations in the three countries, we investigate the role of trust in the Bt cotton partnership in East Africa. Methods Data were collected by reviewing relevant project documents and peer-reviewed articles on Bt cotton in Tanzania, Kenya and Uganda; conducting face-to-face interviews with key informants of the project; and conducting direct observations of the project. Data were analyzed based on recurring and emergent themes to create a comprehensive narrative on how trust is understood and built among the partners and with the community. Results We identified three factors that posed challenges to building trust in the Bt cotton project in East Africa: different regulatory regimes among the three countries; structural and management differences among the three partner institutions; and poor public awareness of GM crops and negative perceptions of the private sector. The structural and management differences were said to be addressed through joint planning, harmonization of research protocols, and management practices, while poor public awareness of GM crops and negative perceptions of the private sector were said to be addressed through open communication, sharing of resources, direct stakeholder engagement and awareness creation. The regulatory differences remained outside the scope of the project. Conclusions To improve the effectiveness of agbiotech PPPs, there is first a need for a regulatory regime that is acceptable to both the public and private sector partners. Second, early and continuous joint planning; sharing of information; and transparency encourages accountability and fosters trust building. Third, direct stakeholder engagement and awareness creation builds trust between project partners and the community. A concern raised by the interviewees was the absence of a regulatory framework in Tanzania, which deterred active private sector participation in the project.

Abstract Background Nigeria, Africa’s most populous country, has been the world’s largest cowpea importer since 2004. The country is currently in the early phases of confined field trials for two genetically modified crops: Bacillus thuringiensis (Bt) cowpea and nutritionally enhanced cassava (“BioCassava Plus”). Using the bio-safety guidelines process as a backdrop, we evaluate the role of trust in the operation of the Cowpea Productivity Improvement Project, which is an international agricultural biotechnology public-private partnership (PPP) aimed at providing pest-resistant cowpea varieties to Nigerian farmers. Methods We reviewed the published literature and collected data through direct observations and semi-structured, face-to-face interviews. Data were analyzed based on emergent themes to create a comprehensive narrative on how trust is understood and built among the partners and with the community. Results Our findings highlight the importance of respecting mandates and eliminating conflicts of interest; holding community engagement initiatives early on; having on-going internal discussion and planning; and serving a locally-defined need. These four lessons could prove helpful to other agricultural biotechnology initiatives in which partners may face similar trust-related challenges. Conclusions Overcoming challenges to building trust requires concerted effort throughout all stages of project implementation. Currently, plans are being made to backcross the cowpea strain into a local variety in Nigeria. The development and adoption of the Bt cowpea seed hinges on the adoption of a National Biosafety Law in Nigeria. For countries that have decided to adopt biotech crops, the Nigerian cowpea experiment can be used as a model for other West African nations, and is actually applied as such in Ghana and Burkina Faso, interested in developing a Bt cowpea.

Civil society organizations (CSOs) are nonprofit organizations that aim to further the interests of the communities they serve. Driven to protect and empower the vulnerable, CSOs work in areas such [...]