Ethical challenges for international collaborative research partnerships in the context of the Zika outbreak in the Dominican Republic: a qualitative case study

Julio Arturo Canario Guzmán, Roberto Espinal, Jeannette Báez, Ricardo Elias Melgen, Patricia Antonia Pérez Rosario, Eddys Rafael Mendoza, Julio Arturo Canario Guzmán, Roberto Espinal, Jeannette Báez, Ricardo Elias Melgen, Patricia Antonia Pérez Rosario, Eddys Rafael Mendoza

Abstract

Background: The establishment of international collaborative research partnerships in times of infectious disease outbreaks of international importance has been considered an ethical imperative. Frail health research systems in low- and middle-income countries can be an obstacle to achieve the goal of knowledge generation and the search for health equity before, during and after infectious disease outbreaks.

Methods: A qualitative case study was conducted to identify the challenges and opportunities facing the Dominican Republic with regards to developing international collaborative research partnerships in the context of the Zika outbreak and its ethical implications. Researchers conducted 34 interviews (n = 30 individual; n = 4 group) with 39 participants (n = 23 males; n = 16 females) representing the government, universities, international donor agencies, non-governmental organisations, community-based organisations and medical societies, in two metropolitan cities.

Results: Five international collaborative research projects related to the Zika virus were identified. Major ethical challenges were linked to the governance of health research, training of human resources, the institutionalisation of scientific activity, access to research funds and cultural aspects. Capacity-building was not necessarily a component of some partnership agreements. With few exceptions, local researchers were merely participating in data collection and less on defining the problem. Opportunities for collaborative work included the possibility of participation in international research consortiums through calls for proposals.

Conclusions: The Dominican government and research stakeholders can contribute to the international response to the Zika virus through active participation in international collaborative research partnerships; however, public recognition of the need to embrace health research as part of public policy efforts is warranted. A working group led by the government and formed by national and international research stakeholders will be key to identify ways in which the country could respond to the ethical demand of generating new knowledge in times of outbreaks.

Keywords: Capacity-building; Caribbean region; Developing countries; Disease outbreaks; Dominican Republic; Health equity; Health research systems; Research ethics; Research networks; Zika virus.

Conflict of interest statement

Ethics approval and consent to participate

The research proposal was reviewed and approved by the Research Ethics Committee of the National Research Center on Maternal and Child Health Dr. Hugo Mendoza (CENISMI).

Consent for publication

All authors approve the publication of this work.

Competing interests

The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

References

    1. Pan American Health Organization . Zika Ethics Consultation: Ethics Guidance on Key Issues Raised by the Outbreak. Washington: PAHO; 2016.
    1. Commission on Health Research for Development . Health Research: Essential Link to Equity in Development. Oxford: Oxford University Press; 1990.
    1. Pang T, Pablos-Mendez A, IJsselmuiden C. From Bangkok to Mexico: towards a framework for turning knowledge into action to improve health systems. Bull World Health Organ. 2004;82(10):719–810.
    1. Global Ministerial Forum on Research for Health. 2008. Bamako Call to Action on Research for Health, Bamako, Mali. . Accessed 8 Dec 2016.
    1. Horton D, Prain G, Thiele G. Perspectives on Partnership: A Literature Review. Working Paper 2009-3. International Potato Center: Lima; 2009.
    1. Bradley M. North-South Research Partnerships: Challenges, Responses and Trends—A Literature Review and Annotated Bibliography. Working Paper 1, IDRC Canadian Partnerships Working Paper Series. Ottawa: International Development Research Centre; 2007.
    1. Parker M, Kingori P. Good and bad research collaborations: researchers’ views on science and ethics in global health research. PLoS ONE. 2016;11(10):e0163579. doi: 10.1371/journal.pone.0163579.
    1. Anderson MS, Steneck NH. Challenges and Tensions in International Research Collaborations. International Research Collaborations: Much to be Gained, Many Ways to get in Trouble. New York: Routledge; 2011.
    1. Amarasekera N. International collaborative clinical research: advantages are many, but we need to be cautious. Ceylon Med J. 2012;57(4):137–9.
    1. Susan Orsega CW. International collaborative research partnerships: blending science with management and diplomacy. J AIDS Clin Res. 2014;5(12):385. doi: 10.4172/2155-6113.1000385.
    1. Sauer S, Arrison T. Examining Core Elements of International Research Collaboration: Summary of a Workshop. . Accessed 8 Dec 2016.
    1. Sack DA, Brooks V, Behan M, Cravioto A, Kennedy A, Ijsselmuiden C, et al. Improving international research contracting. Bull World Health Organ. 2009;87(7):487–487A. doi: 10.2471/BLT.08.058099.
    1. UNESCO. Universal declaration on bioethics and human rights. 2006. . Accessed 8 Dec 2016.
    1. World Medical Association. Ethical Principles for Medical Research Involving Human Subjects. Declaration of Helsinki. 2004. . Accessed 8 Dec 2016.
    1. International Ethical Guidelines for Health-related Research Involving Humans, Fourth Edition. Geneva: Council for International Organizations of Medical Sciences (CIOMS); 2016.
    1. Emanuel EJ, Wendler D, Killen J, Grady C. What makes clinical research in developing countries ethical? The benchmarks of ethical research. J Infect Dis. 2004;189(5):930–7. doi: 10.1086/381709.
    1. Hellmann F, Garrafa V, Schlemper Junior BR, Bittencourt SC. Moral imperialism in NIH Fogarty training program and the continuing unethical trials in poor countries: a rejoinder. Arch Med Res. 2016;47(1):67–8. doi: 10.1016/j.arcmed.2016.01.006.
    1. Israel M. Ethical Imperialism? Exporting Research Ethics to the Global South. In: Iphofen R, Tolich M, editors. The SAGE Handbook of Qualitative Research Ethics. London: Sage; 2017.
    1. Ippolito G, Lanini S, Brouqui P, Di Caro A, Vairo F, Abdulla S, Fusco FM, Krishna S, Capobianchi MR, Kyobe-Bosa H, Lewis DJ, Puro V, Wolfel R, Avsic-Zupanc T, Dar O, Mwaba P, Bates M, Heymann D, Zumla A. Ebola: missed opportunities for Europe Africa research. Lancet Infect Dis. 2015;15(11):1254–5. doi: 10.1016/S1473-3099(15)00236-4.
    1. Horby PW, Endzt H, Muyembe-Tamfum JJ, van Griensven J, Gevao S, Goossens H, Malvy D, Haba NY, Yazdanpanah Y, Olliaro P, Semple C, de Jong M, Delamou A, Lang T, Carson G, Kennedy SB. Ebola: Europe-Africa research collaborations. Lancet Infect Dis. 2015;15(11):1258–9. doi: 10.1016/S1473-3099(15)00375-8.
    1. Folayan MO, Peterson K, Kombe F. Ethics, emergencies and Ebola clinical trials: the role of governments and communities in offshored research. Pan Afr Med J. 2015;22(Supp 1):10.
    1. Global Forum on Bioethics in Research. About the Global Forum on Bioethics in Research (GFBR). 2016. . Accessed 8 Jan 2017.
    1. World Health Organization. WHO Director-General summarizes the outcome of the Emergency Committee regarding clusters of microcephaly and Guillain-Barré syndrome. 2016. . Accessed 18 July 2016.
    1. World Health Organization. Zika Outbreak: WHO’s Global Emergency Response Plan. . Accessed 18 Apr 2016.
    1. Pan American Health Organization, World Health Organization. Zika Research. Published Primary Research Studies and Protocols. . Accessed 25 Sept 2016.
    1. World Bank. Dominican Republic Overview. 2015. . Accessed 9 May 2016.
    1. United Nations Development Programme. Human Development Reports. Table 1: Human Development Index and its components. . Accessed 29 Aug 2017.
    1. WHO, UNICEF, UNFPA and the World Bank. Maternal mortality in 2005: estimates developed by WHO, UNICEF, UNFPA and the World Bank. Geneva: WHO; 2007. . Accessed 29 Aug 2017.
    1. The Work Bank. Data. Infant Mortality Rate in the Dominican Republic. . Accessed 29 Aug 2017.
    1. Secretaría de Estado de Salud Pública y Asistencia Social (SESPAS). Ley General de Salud (42-01). 2001. . Accessed 11 May 2016.
    1. Gómez P. Seminario de Investigación Cientifica e Innovación Tecnologica: ERANet LAC. Santo Domingo: MESCYT, FONDOCYT; 2016.
    1. Canario JA, Lizardo J, Espinal R, Colomé M. Gaps in health research in the Dominican Republic. Rev Panam Salud Publica. 2016;39(4):179–85.
    1. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health. 2015;42(5):533–44. doi: 10.1007/s10488-013-0528-y.
    1. Carter N, Bryant-Lukosius D, DiCenso A, Blythe J, Neville AJ. The use of triangulation in qualitative research. Oncol Nurs Forum. 2014;41(5):545–7. doi: 10.1188/14.ONF.545-547.
    1. . Home. . Accessed 9 Dec 2016.
    1. Consejo Nacional de Bioética en Salud. Inicio. . Accessed 9 Dec 2016.
    1. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi: 10.1191/1478088706qp063oa.
    1. Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398–405. doi: 10.1111/nhs.12048.
    1. O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51. doi: 10.1097/ACM.0000000000000388.
    1. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57. doi: 10.1093/intqhc/mzm042.
    1. Red Avanzada Dominicana de Estudio e Investigación (RADEI). INDOTEL. . Accessed 23 Sept 2017.
    1. RedCLARA. . Accessed 7 Dec 2016.
    1. CYTED Programa Iberoamericano de Ciencia y Tecnologia para el Desarrollo. Banner Home. . Accessed 7 Dec 2016.
    1. Tropical Disease Research, World Health Organization. . Accessed 7 Dec 2016.
    1. ERANet-LAC: Latin America, Caribbean and European Union. . Accessed 7 Dec 2016.
    1. Pratt B, Hyder AA. Governance of Transnational Global Health Research Consortia and Health Equity. Am J Bioeth. 2016;16(10):29–45. doi: 10.1080/15265161.2016.1214304.
    1. Pang T, Sadana R, Hanney S, Bhutta ZA, Hyder AA, Simon J. Knowledge for better health: a conceptual framework and foundation for health research systems. Bull World Health Organ. 2003;81(11):815–20.
    1. Solimano CG. Research in public health: Beyond international collaboration. Rev Médica Chile. 2012;140(10):1363–4. doi: 10.4067/S0034-98872012001000021.
    1. World Health Organization. Ethics in Epidemics, Emergencies and Disasters: Research, Surveillance and Patient Care. . Accessed 9 Dec 2016.
    1. Gotuzzo E, González E, Verdonck K. Formación de investigadores en el contexto de Proyectos colaborativos: experiencias en el Instituto de Medicina Tropical “Alexander Von Humboldt”, Universidad Peruana Cayetano Heredia. Rev Peru Med Exp Salud Pub. 2010;27(3):419–27. doi: 10.1590/S1726-46342010000300015.
    1. Archer SL. The making of a physician-scientist--the process has a pattern: lessons from the lives of Nobel laureates in medicine and physiology. Eur Heart J. 2007;28(4):510–4. doi: 10.1093/eurheartj/ehl452.
    1. Yozwiak NL, Happi CT, Grant DS, Schieffelin JS, Garry RF, Sabeti PC, et al. Roots, not parachutes: research collaborations combat outbreaks. Cell. 2016;166(1):5–8. doi: 10.1016/j.cell.2016.06.029.
    1. Heymann DL, Liu J, Lillywhite L. Partnerships, not parachutists, for Zika research. N Engl J Med. 2016;374(16):1504–5. doi: 10.1056/NEJMp1602278.
    1. Ravinetto R, Becker SL, Sacko M, El-Safi S, Mahendradhata Y, Lutumba P, et al. Governance and standards in international clinical research: the role of transnational consortia. Am J Bioethics. 2016;16(10):59–61. doi: 10.1080/15265161.2016.1214317.
    1. Neupane S, Boulanger RF, Taylor P. The role of development research funders in promoting equity in research consortia. Am J Bioethics. 2016;16(10):62–4. doi: 10.1080/15265161.2016.1214316.
    1. Aarons D. Research in epidemic and emergency situations: A model for collaboration and expediting ethics review in two Caribbean countries. Dev World Bioeth. 2017

Source: PubMed

3
Subscribe