BMC Medical Ethics 13 (1):13- (2012)

Abstract
BackgroundThere is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome Trust programme in Kilifi, Kenya.MethodsFollowing an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits.ConclusionsResearch staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability
Keywords info:mesh/Guidelines as Topic  info:mesh/Health Services Needs and Demand  info:mesh/Humans  info:mesh/Kenya  info:mesh/Research Subjects  info:mesh/Health Services Accessibility  Humans   Questionnaires   Food   Research Subjects   Employment   Health Services Needs and Demand   Health Services Accessibility   Kenya   Guidelines as Topic  info:mesh/Food  info:mesh/Questionnaires  info:mesh/Employment
Categories (categorize this paper)
DOI 10.1186/1472-6939-13-13
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 58,834
Through your library

References found in this work BETA

The Role of Empirical Research in Bioethics.Alexander A. Kon - 2009 - American Journal of Bioethics 9 (6-7):59-65.

View all 15 references / Add more references

Citations of this work BETA

View all 16 citations / Add more citations

Similar books and articles

Students as Research Participants or as Learners?Ling Shi - 2006 - Journal of Academic Ethics 4 (1-4):205-220.

Analytics

Added to PP index
2012-12-06

Total views
13 ( #726,021 of 2,426,000 )

Recent downloads (6 months)
1 ( #544,761 of 2,426,000 )

How can I increase my downloads?

Downloads

My notes