Exchange of secondary data in research with human beings: Ethical aspects
DOI:
https://doi.org/10.56294/saludcyt2023432Keywords:
Ethics, Research, Data Sharing, Data ManagementAbstract
Introduction: currently, there is a call from the scientific community for a responsible exchange of data, being relevant to promote innovation in research through the reuse of secondary data. However, the data exchange is not free of difficulties since it imposes relevant ethical challenges. On the other hand, the data exchange is also limited by legislative aspects of each country in terms of data privacy; for example, the Chilean legal system is presented.
Objective: to identify the ethical aspects of exchanging secondary data in research with human beings.
Methods: integrative review. Data sources: WoS, PUBMED, Scopus, and publications were searched between 2017 and 2022.
Results: the final sample consisted of 12 articles, and they were organized according to ethical aspects, concerns of the research subject, and the researcher’s position in the exchange of data in research with human beings.
Discussion: the creation of a Data Access Committee (DAC) and an international ethical framework are initiatives that are promoted to advance the exchange of data in research with humans. However, the legal frameworks become relevant in the context of data protection in each country, as is the Chilean case.
Conclusion: progress must be made in aspects of broad informed consent, which is directly related to the legal framework of each country
References
1. National Institutes of Health (NIH). Statement on Final NIH Policy for Data Management and Sharing. 2020. https://n9.cl/ruwek
2. Organización para la Cooperación y el Desarrollo Económicos (OECD). 2021. Legal Instruments. https://n9.cl/xb9dm
3. Aleixandre-Benavent R, Ferrer Sapena A, Peset F. Compartir los recursos útiles para la investigación: datos abiertos (open data). Edu Med. 2021; 22 (3):208–15. https://doi.org/10.1016/j.edumed.2019.07.004
4. Cullinan P, Roberts L. Unlocking the potential of patient data through responsible sharing – has anyone seen my keys? MEW. 2020;29 (2):46–51.
5. Organización Mundial de la Salud (OMS). Política de Acceso abierto. 2022. https://n9.cl/y8mkm
6. National Institutes of Health (NIH). Policy for Data Management and Sharing. 2020. https://n9.cl/77h3j
7. National Institutes of Health (NIH). Final NIH statement on sharing research data. 2003. https://n9.cl/ynggi
8. Bezuidenhout L. To share or not to share: Incentivizing data sharing in life science communities. Developing World Bioethics. 2019; 19(1):18–24. http://dx.doi.org/10.1111/dewb.12183
9. Ríos JA, Alcalde E, Ramírez E, Campbell M, Labbé TP, Becerra S, et al. Una red de biobancos para Chile: investigar hoy, para curar mañana. Rev méd Chil. 2019;147(7):901–9.
10. Crossetti M. Revisión integrativa de la investigación en enfermería, el rigor científico que se le exige. Rev Gaúcha Enferm. 2012, Jun.;33(2):10-11. https://doi.org/10.1590/S1983-14472012000200002
11. Anane-Sarpong E, Wangmo T, Ward CL, Sankoh O, Tanner M, Elger BS. You cannot collect data using your own resources and put It on open access: Perspectives from Africa about public health data-sharing. Developing World Bioethics. 2017;18(4):394–405. http://dx.doi.org/10.1111/dewb.12159
12. Anane-Sarpong E, Wangmo T, Sankoh O, Tanner M, Elger BS. Application of Ethical Principles to Research using Public Health Data in The Global South: Perspectives from Africa. Developing World Bioethics. 2018;18(2):98–108. http://dx.doi.org/10.1111/dewb.12138
13. Cheah PY, Piasecki J. Data Access Committees. BMC Med Ethics. 2020; 21(1):12. https://doi.org/10.1186%2Fs12910-020-0453-z
14. Alter G, Gonzalez R. Responsible Practices for Data Sharing. Am Psychol. 2018; 73(2):146–56. DOI: https://doi.org/10.1037/amp0000258
15. Vlahou A, Hallinan D, Apweiler R, Argiles A, Beige J, Benigni A, et al. Data Sharing Under the General Data Protection Regulation: Time to Harmonize Law and Research Ethics? Hypertension. 2021;77(4):1029–35. https://doi.org/10.1161/HYPERTENSIONAHA.120.16340
16. Chavarria-Soley G, Francis-Cartin F, Jimenez-Gonzalez F, Ávila-Aguirre A, Castro-Gomez MJ, Robarts L, et al. Attitudes of Costa Rican individuals towards donation of personal genetic data for research. Personalized Medicine. 2021; 18(2):141–52. https://doi.org/10.2217/pme-2020-0113
17. Shah N, Coathup V, Teare H, Forgie I, Giordano GN, Hansen TH, et al. Sharing data for future research’engaging participants’ views about data governance beyond the original project: a DIRECT Study. Genetics in Medicine. 2019; 21(5):1131–8. https://doi.org/10.1038/s41436-018-0299-7
18. Milne R, Morley KI, Almarri MA, Anwer S, Atutornu J, Baranova EE, et al. Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries. Genome Medicine. 2021; 13(1):92. https://doi.org/10.1186/s13073-021-00903-0
19. Middleton A, Milne R, Almarri MA, Anwer S, Atutornu J, Baranova EE, et al. Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data? The American Journal of Human Genetics. 2020; 107(4):743–52. https://doi.org/10.1016/j.ajhg.2020.08.023
20. Milne R, Morley KI, Howard H, Niemiec E, Nicol D, et al. Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia. Hum Genet. 2019;138(11–12):1237–46. https://doi.org/10.1007/s00439-019-02062-0
21. Bell RJ, Haring R. When you are making plans to publish research, you need to plan for data sharing. Climacteric. 2020; 23(5):466–7. https://doi.org/10.1080/13697137.2020.1771302
22. Anane-Sarpong E, Wangmo T, Tanner M. Ethical principles for promoting health research data sharing with sub-Saharan Africa. Dev World Bioeth. 2020; 20(2):86–95. http://dx.doi.org/10.1111/dewb.12233
23. Maqueo Ramírez MS, Moreno González J, Recio Gayo M. Protección de datos personales, privacidad y vida privada: la inquietante búsqueda de un equilibrio global necesario. Revista de derecho (Valdivia). 2017; 30(1):77–96. https://doi.org/10.4067/S0718-09502017000100004
24. Biblioteca del Congreso Nacional. Constitución Política de la República de Chile. Chile. 2005. https://www.bcn.cl/leychile
25. Biblioteca del Congreso Nacional. Ley 19.628 Chile. 1999. https://www.bcn.cl/leychile
26. Biblioteca del Congreso Nacional. Ley 20.120 Chile. 2006. https://www.bcn.cl/leychile
27. Díaz CB. Obligaciones de seguridad en el tratamiento de datos personales en Chile: escenario actual y desafíos regulatorios pendientes. Revista Chilena de Derecho y Tecnología. 2020; 9(1):227–79. https://doi.org/10.5354/0719-2584.2020.56660
28. Rothstein MA. Informed Consent for Secondary Research Under the New NIH Data Sharing Policy. JLME. 2021; 49(3):489-494. https://doi.org/10.1017/jme.2021.69
29. Murtagh MJ, Blell MT, Butters OW, Cowley L, Dove ES, Goodman A, et al. Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure. Hum Genomics. 2018; 12(1):24 https://doi.org/10.1186%2Fs40246-018-0154-6
30.Gonzalez-Argote J. Resúmenes abiertos y citas abiertas: hacia una ciencia abierta con alto estándar. Sal. Cienc. Tecnol. 2022; 2:100. Disponible en: https://doi.org/10.56294/saludcyt2022100
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