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Realizing benefit sharing - the case of post-study obligations.

Doris Schroeder¹, Eugenijus Gefenas

¹University of Central Lancashire, Centre for Professional Ethics, Brook 317, Preston PR1 2HE, United Kingdom. dschroeder@uclan.ac.uk

|January 19, 2011

Summary

Benefit sharing in health research is crucial. Post-study healthcare access for participants is challenging; alternative benefits are more promising for compliance, though they also face obstacles.

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Area of Science:

Global Health
Bioethics
Health Policy

Background:

The 2006 Indonesian avian flu sample withholding highlighted benefit-sharing concerns in global health research.
Benefit sharing mandates that research resource users provide benefits back to resource providers for equitable outcomes.
Post-study obligations, like healthcare interventions for participants, are a key benefit-sharing tool in health research.

Purpose of the Study:

To analyze obstacles hindering effective benefit-sharing provisions in health research.
To evaluate the feasibility and effectiveness of post-study healthcare access as a benefit-sharing mechanism.
To explore alternative benefit-sharing strategies and their challenges.

Main Methods:

Analysis of ethical review processes concerning benefit-sharing in health research.
Examination of the practical implementation and monitoring of post-study obligations.
Review of case studies and ethical guidelines, including the Declaration of Helsinki.

Main Results:

Ethical review committees face significant challenges in enforcing post-study healthcare access for research participants.
The provision of post-study healthcare interventions is not a consistently effective benefit-sharing mechanism.
Alternative benefit provisions show more promise for achieving compliance, despite inherent difficulties.

Conclusions:

Current ethical review mechanisms are insufficient to ensure robust post-study healthcare access in health research.
Alternative benefit provisions are a more viable strategy for ensuring compliance in benefit sharing.
Recommendations are provided to address the challenges associated with alternative benefit provision in health research.