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

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          Abstract

          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.

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          Is there a bias against telephone interviews in qualitative research?

          Gina Novick (2008)
          Telephone interviews are largely neglected in the qualitative research literature and, when discussed, they are often depicted as a less attractive alternative to face-to-face interviewing. The absence of visual cues via telephone is thought to result in loss of contextual and nonverbal data and to compromise rapport, probing, and interpretation of responses. Yet, telephones may allow respondents to feel relaxed and able to disclose sensitive information, and evidence is lacking that they produce lower quality data. This apparent bias against telephone interviews contrasts with a growing interest in electronic qualitative interviews. Research is needed comparing these modalities, and examining their impact on data quality and their use for studying varying topics and populations. Such studies could contribute evidence-based guidelines for optimizing interview data. 2008 Wiley Periodicals, Inc
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            More than the money: a review of the literature examining healthy volunteer motivations.

            Leanne Stunkel, Christine Grady (2011)
            Few existing data report the motivations of healthy volunteers in clinical research trials. Some worry that volunteers consider only financial motivations. This study summarized and analyzed existing empirical research on self-reported motivations of healthy volunteers participating in studies not intended to offer benefit from participation. A systematic PubMed search was conducted. Inclusion criteria captured English-language empirical studies on the self-reported motivations, reasons, or factors influencing the decision of healthy volunteers to enroll in clinical research. Thirteen studies involving more than 2000 healthy volunteers met the criteria and were included in this review. Independent review by the authors and extraction of information about the sample, methodology and objectives of the motivations study, description of the clinical trial and whether participation was actual or hypothetical, reported primary and secondary motivations of the healthy volunteers, risk evaluation, and reported differences in motivations related to sociodemographic variables. This review showed that although financial reward is the primary motivation for healthy volunteers to participate in clinical trials, financial motivations are one among many other reported motivations, including contributing to science or the health of others, accessing ancillary healthcare benefits, scientific interest or interest in the goals of the study, as well as meeting people and curiosity. Volunteers consider risk when making a decision about participation. Although financial incentives are important in recruiting healthy volunteers, their motivations are not limited to financial motivations. Further research is needed to examine motivations in different contexts and countries, the decision making of healthy volunteers, and the dynamics of repeat participation. Published by Elsevier Inc.
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              The influence of risk and monetary payment on the research participation decision making process.

              J P Bentley (2004)
              To determine the effects of risk and payment on subjects' willingness to participate, and to examine how payment influences subjects' potential behaviours and risk evaluations. A 3 (level of risk) x 3 (level of monetary payment), between subjects, completely randomised factorial design was used. Students enrolled at one of five US pharmacy schools read a recruitment notice and informed consent form for a hypothetical study, and completed a questionnaire. Risk level was manipulated using recruitment notices and informed consent documents from hypothetical biomedical research projects. Payment levels were determined using the payment models evaluated by Dickert and Grady as a guide. Five dependent variables were assessed in the questionnaire: willingness to participate, willingness to participate with no payment, propensity to neglect to tell about restricted activities, propensity to neglect to tell about negative effects, and risk rating. Monetary payment had positive effects on respondents' willingness to participate in research, regardless of the level of risk. However, higher monetary payments did not appear to blind respondents to the risks of a study. Payment had some influence on respondents' potential behaviours regarding concealing information about restricted activities. However, payment did not appear to have a significant effect on respondents' propensity to neglect to tell researchers about negative effects. Monetary payments appear to do what they are intended to do: make subjects more willing to participate in research. Concerns about payments blinding subjects to risks could not be substantiated in the present study. However, the findings do raise other concerns--notably the potential for payments to diminish the integrity of a study's findings. Future research is critical to make sound decisions about the payment of research subjects.
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                Author and article information

                Journal
                Title: Journal of Empirical Research on Human Research Ethics
                Abbreviated Title: Journal of Empirical Research on Human Research Ethics
                Publisher: SAGE Publications
                ISSN (Print): 1556-2646
                ISSN (Electronic): 1556-2654
                Publication date Created: December 26 2018
                Publication date Created: February 2019
                Publication date (Electronic): December 26 2018
                Publication date (Print): February 2019
                Volume: 14
                Issue: 1
                Pages: 49-60
                Affiliations
                [1 ]Seattle Children’s Research Institute, WA, USA
                [2 ]University of Washington School of Medicine, Seattle, USA
                [3 ]Fred Hutchinson Cancer Research Center, Seattle, WA, USA
                [4 ]University of Washington, Seattle, USA
                [5 ]Northwestern University Feinberg School of Medicine, Chicago, IL, USA
                [6 ]Stanley Manne Children’s Research Institute, Chicago, IL, USA
                [7 ]Ann & Robert H. Lurie Children’s Hospital of Chicago, IL, USA
                Article
                DOI: 10.1177/1556264618820219
                PubMed ID: 30585505
                SO-VID: abf8b353-2da0-47ad-8888-ea40d8b29c90
                Copyright © © 2019
                License:

                http://journals.sagepub.com/page/policies/text-and-data-mining-license

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