Participant incentives in rehabilitation research: a pilot study of researchers’ perspectives

Background: Despite the use of research incentives in the recruitment and retention of participants for research studies, there remains debate over the acceptable use of participant incentives in research. There appears to be a paucity of guidelines that can assist researchers in demonstrating practically how incentives may be ethically used in research.Objective: This single site pilot study explored the experiences of key stakeholders involved in rehabilitation research to highlight what may constitute acceptable practices for incentives.Methods: A qualitative inquiry with use of semi-structured interviews with four key informants from a single site was undertaken. Data was audio-recorded and analysed thematically using deductive reasoning.Results: The findings reflect a description of what incentives constitute; the issues around undue inducement and use of incentives in practice. Participants’ offered their perceptions on perceived acceptable versus unacceptable practices in the use incentives in research. Participants shared their concern over research incentives being used to sway participation in research rather than reimburse participants for their expenses or offering a token of appreciation.Conclusion: There is a need for education of practitioners and researchers to develop skill to aid researchers to evaluate the ethical dilemmas related to the use of incentives in research.Keywords: Participant incentives, rehabilitation research, researchers’ perspectives.

Exploring Ethical Concerns About Human Challenge Studies: A Qualitative Study of Controlled Human Malaria Infection Study Participants’ Motivations and Attitudes

Controlled human malaria infection (CHMI) studies deliberately infect healthy participants with malaria to test interventions faster and more efficiently. Some argue the study design and high payments offered raise ethical concerns about participants’ understanding of risks and undue inducement. We conducted baseline and exit interviews with 16 CHMI study participants to explore these concerns. Participants described themes including decision-making tension with friends and family, mixed motivations for participating, low study risks but high burdens, fair compensation, sacrificing values, deceiving researchers, and perceived benefits. Our findings do not support concerns that high payments limit understanding of study risks, but suggest participants may lack appreciation of study burdens, withhold information or engage in deception, and experience conflict with others regarding study participation.

Should All Living Kidney Donors Receive Donor Health Insurance? - Ethical Guidance for Evaluating Policies and Actions that Provide Financial Benefits to Living Organ Donors

This review article provides ethical guidance for determining which kinds of financial benefits provided to living organ donors are ethically appropriate. It does so by way of ethical analysis of a policy case study: the National Kidney Registry (NKR) has implemented a donor insurance program to all its living donors. Is such a policy ethically supportable, or is it an unethical practice? The article proceeds as follows. First, a framework for grounding the ethical commitments of transplant programs is defended. It is argued that this framework can be accepted by all who work in transplant medicine, regardless of differences in ethical theory preference or background. Second, from this framework two ethical principles are formulated. (1) Living donors should, as far as possible, not be worse off for donating. (2) Disincentives towards donation should be removed as much as possible. Third, issues with unethical incentives are explored: undue inducement, commodification of the body, potential decreased organ donation rates, and potential exploitation of vulnerable populations. Lastly, these ethical considerations are applied to the policy change at the NKR, showing that the NKR policy change appears to be ethically supportable. Financial benefits provided to donors are ethically sound if they are in keeping with principles (1) and (2), and do not cause undue inducement, commodification, decreased organ donation, or exploitation. It is ethically appropriate for transplant programs to institute as well as study such programs with the goal of serving the welfare and interests of patients, donors, and the general public.

Avoiding Exploitation in Phase I Clinical Trials: More than (Un)Just Compensation

Lowering compensation to research subjects to protect them from “undue inducement” is a misguided attempt to shoehorn a concern about exploitation into the framework of autonomy. We suggest that oversight bodies should be less concerned about undue influence than about exploitation of subjects. Avoiding exploitation in human subjects research requires not only increasing compensation, but enhancing the dignity of research participation.

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

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.