Participation in medical research as a resource-seeking strategy in socio-economically vulnerable communities: call for research and action


Ravinetto, RM; Afolabi, MO; Okebe, J; van Nuil, JI; Lutumba, P; Mavoko, HM; Nahum, A; Tinto, H; Addissie, A; D'Alessandro, U; Grietens, KP; (2014) Participation in medical research as a resource-seeking strategy in socio-economically vulnerable communities: call for research and action. Tropical medicine & international health, 20 (1). pp. 63-66. ISSN 1360-2276 DOI: https://doi.org/10.1111/tmi.12396

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Abstract

The freedom to consent to participate in medical research is a complex subject, particularly in socio-economically vulnerable communities, where numerous factors may limit the efficacy of the informed consent process. Informal consultation among members of the Switching the Poles Clinical Research Network coming from various sub-Saharan African countries, that is Burkina Faso, The Gambia, Rwanda, Ethiopia, the Democratic Republic of Congo (DRC) and Benin, seems to support the hypothesis that in socio-economical vulnerable communities with inadequate access to health care, the decision to participate in research is often taken irrespectively of the contents of the informed consent interview, and it is largely driven by the opportunity to access free or better quality care and other indirect benefits. Populations' vulnerability due to poverty and/or social exclusion should obviously not lead to exclusion from medical research, which is most often crucially needed to address their health problems. Nonetheless, to reduce the possibility of exploitation, there is the need to further investigate the complex links between socio-economical vulnerability, access to health care and individual freedom to decide on participation in medical research. This needs bringing together clinical researchers, social scientists and bioethicists in transdisciplinary collaborative research efforts that require the collective input from researchers, research sponsors and funders. La liberte de consentir a participer a la recherche medicale est un sujet complexe, en particulier dans les communautes socioeconomiquement vulnerables, oU de nombreux facteurs peuvent limiter l'efficacite du processus de consentement eclaire. Une consultation informelle parmi les membres du Reseau Switching the Poles Clinical Research' en provenance de divers pays d'Afrique subsaharienne, a savoir le Burkina-Faso, la Gambie, le Rwanda, l'Ethiopie, la Republique democratique du Congo et le Benin, semble appuyer l'hypothese que dans les communautes socioeconomiquement vulnerables avec un acces inadequat aux soins de sante, la decision de participer a la recherche est souvent prise independamment du contenu de l'interview de consentement eclaire, et elle est en grande partie motivee par l'opportunite d'acceder a des soins de qualite gratuits ou meilleurs et d'autres avantages indirects. La vulnerabilite des populations due a la pauvrete et/ou l'exclusion sociale ne devrait evidemment pas conduire a leur exclusion de la recherche medicale, qui le plus souvent est crucialement necessaire pour repondre a leurs problemes de sante. Neanmoins, afin de reduire la possibilite d'exploitation, il est necessaire d'investiguer plus en details les liens complexes entre la vulnerabilite socioeconomique, l'acces aux soins de sante et la liberte individuelle a decider de la participation a la recherche medicale. Cela doit reunir les agents de la recherche clinique, des sciences sociales et de la bioethique dans des efforts de recherche en collaboration transdisciplinaire qui necessitent l'apport collectif des chercheurs, des sponsors de la recherche et des bailleurs de fonds. La libertad de dar consentimiento para participar en proyectos de investigacion medica es un tema complejo, particularmente en comunidades socioeconomicamente vulnerables, en donde numerosos factores pueden limitar la eficacia del procedimiento del consentimiento informado. Una consulta informal a miembros de la red de investigacion Switching the Poles Clinical Research Network, pertenecientes a varios paises del africa subsahariana (Burkina Faso, Gambia, Ruanda, Etiopia, la Republica Democratica del Congo y Benin), parece apoyar la hipotesis de que en comunidades socioeconomicamente vulnerables con una acceso inadecuado a cuidados sanitarios, la decision de participar en investigacion a menudo se toma independientemente del contenido de la entrevista para el consentimiento informado, y en gran parte se debe a la oportunidad de tener acceso a cuidados sanitarios gratuitos o mejores, asi como a otros beneficios indirectos. La vulnerabilidad de la poblacion debido a la pobreza y/o exclusion social obviamente no deberia llevar a la exclusion de investigaciones medicas, las cuales a menudo son cruciales para abordar sus problemas sanitarios. Sin embargo, con el fin de reducir la posibilidad de explotacion, es necesario investigar mas a fondo el nexo complejo entre la vulnerabilidad socioeconomica, el acceso a cuidados sanitarios y la libertad individual para decidir participar en investigacion medica. Ello requiere un esfuerzo conjunto de los investigadores clinicos, sociales y expertos en bioetica mediante trabajos de colaboracion transdisciplinar con la aportacion colectiva de los investigadores, patrocinadores y financiadores de la investigacion.

Item Type: Article
Faculty and Department: Faculty of Infectious and Tropical Diseases > Dept of Disease Control
Faculty of Epidemiology and Population Health > Dept of Infectious Disease Epidemiology
Faculty of Infectious and Tropical Diseases > Dept of Clinical Research
PubMed ID: 25302444
Web of Science ID: 345970400008
URI: http://researchonline.lshtm.ac.uk/id/eprint/2031065

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