Routine healthcare: whose obligation?

Aellah, G.; Chantler, Tracey; Geissler, Paul Wenzel

doi:10.1079/9781786390042.0085

Cited by 7 publications

(10 citation statements)

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“…It is not enough to say the explanation was provided in the informed consent so the potential participants should understand and realize they may get no direct benefits from the study. 24 The participants may have been provided with many services they normally do not have access to in order to facilitate their retention. Investigators may want to consider whether clinical trials need to better manage participants’ expectations of study benefits 25 and perhaps consider how to empower the participant more broadly as the suggestions for compensation indicate.…”

Section: Discussionmentioning

confidence: 99%

Participant satisfaction with clinical trial experience and post-trial transitioning to HIV care in Kenya

et al. 2018

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We conducted an exploratory analysis of former HIV Prevention Trials Network 052 (HPTN 052) clinical trial participants in 2016 to assess their (1) satisfaction with the HPTN 052 clinical trial care and treatment, and reasons for joining the trial; and (2) perspectives about the post-trial transition to public HIV care centers. Quantitative data showed that, of the 70 survey participants, 94.3% (n = 66) reported being very satisfied with the care and treatment they received while participating in the clinical trial and 51.4% (n = 36) reported they joined the study because they would receive information to improve their own or their partner's health. Qualitative data (five in-depth interviews and two focus group discussions) analysis revealed the following themes: transition experiences; perceived superior clinical trial care; study benefits not offered at public HIV care centers; and the public HIV care centers' indifference to the uninfected partner. For some HPTN 052 participants, transition to HIV care clinics was disappointing. Clinical trial investigators and local Institutional Review Boards should consider the need for safeguards and oversight of post-trial health care for trial participants after the trial ends, especially in resource-constrained settings, to avoid negative health outcomes.

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Section: Discussionmentioning

confidence: 99%

Participant satisfaction with clinical trial experience and post-trial transitioning to HIV care in Kenya

et al. 2018

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“…Poorly planned medical components of research projects can leave participants feeling used and with the view that the health care system is uncommitted (Aellah, Chantler, & Geissier, 2016; Angwenyi et al, 2015). The challenge is to retain the independence of the research program from the health services and yet support a functioning partnership with the community (Jaffar et al, 2008).…”

Section: Discussionmentioning

confidence: 99%

The Ethics of Health Care Delivery in a Pediatric Malaria Vaccine Trial: The Perspectives of Stakeholders From Ghana and Tanzania

Ward

Shaw

Anane-Sarpong

et al. 2017

Journal of Empirical Research on Human Research Ethics

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This study explores ethical issues raised in providing medical care to participants and communities of low-resource settings involved in a Phase II/III pediatric malaria vaccine trial (PMVT). We conducted 52 key informant interviews with major stakeholders of an international multi-center PMVT (GSK/PATH-MVI RTS,S) (NCT00866619) in Ghana and Tanzania. Based on their stakeholder experiences, the responses fell into three main themes: (a) undue inducement, (b) community disparities, and (c) broad therapeutic misconceptions. The study identified the critical ethical aspects, from the perspectives of stakeholders, of delivering health care during a PMVT. The study showed that integrating research into health care services needs to be addressed in a manner that upholds the favorable risk-benefit ratio of research and attends to the health needs of local populations. The implementation of research should aim to improve local standards of care through building a collaborative agenda with local institutions and systems of health.

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“…Their relationship is at once highly technical and sometimes deeply human. Furthermore, it is one which, while at first glance—in the moment of drawing blood or obtaining consent—seems to be a relationship between two individuals, in reality stands for relationships between whole populations, countries, governments and institutions 25. (p 18)…”

Section: Distributive Justice and Institution’s Obligation Regarding ...mentioning

confidence: 99%

Should institutions fund the feedback of individual findings in genomic research?

et al. 2022

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The article argues the thesis that institutions have a prima facie obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service in research by mostly appealing to dominant principles and theories in the Global North, this mostly normative study explores this question by appealing to underexplored African philosophy. This is a new way of thinking about institutional responsibility to fund feedback and responds to the call to decolonise health research in Africa. Further studies are required to study how this prima facie obligation will interact with social contexts and an institution’s extant relationships to find an actual duty. The research community should also work out procedures, policies and governance structures to facilitate feedback. In our opinion, though the impacts of feeding back can inform how institutions think about their actual duty, these do not obliterate the binding duty to fund feedback.

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Routine healthcare: whose obligation?

Cited by 7 publications

References 0 publications

Participant satisfaction with clinical trial experience and post-trial transitioning to HIV care in Kenya

Participant satisfaction with clinical trial experience and post-trial transitioning to HIV care in Kenya

The Ethics of Health Care Delivery in a Pediatric Malaria Vaccine Trial: The Perspectives of Stakeholders From Ghana and Tanzania

Should institutions fund the feedback of individual findings in genomic research?

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