Heuristic decision-making about research participation in children with cystic fibrosis

Christofides, Emily; Dobson, Jennifer; Solomon, Melinda; Waters, Valerie; O’Doherty, Kieran C.

doi:10.1016/j.socscimed.2016.06.017

Cited by 15 publications

(17 citation statements)

References 37 publications

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“…They described a pre‐disposition to take part in clinical research or not, and then sought cues, particularly regarding trustworthiness, to confirm or contradict that position. Others have made similar observations suggesting that rapid decision making at a time of increased risk and uncertainty may reflect a natural way that people have evolved to competently navigate complex environments . These insights about the nuances of participant decision making challenge assumptions underpinning our current models of research enrolment and suggest they may be oversimplified.…”

Section: Discussionmentioning

confidence: 93%

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Gobat

Gal

Butler

et al. 2017

Health Expectations

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BackgroundPandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza‐like illness pandemic.MethodsDescriptive‐interpretive qualitative study, using focus groups (n = 10) and semi‐structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK. Local qualitative researchers followed a scenario‐based topic guide to collect data. Data were transcribed verbatim, translated into English and subject to framework analysis.ResultsPublic understandings of pandemics were shaped by personal factors (illness during the previous H1N1 pandemic, experience of life‐threatening illness) and social factors (historical references, media, public health information). Informants appreciated safeguards provided by ethically robust research procedures, but current enrolment procedures were seen as a barrier. They proposed simplified enrolment processes for higher risk research and consent waiver for certain types of low‐risk research. Decision making about research participation was influenced by contextual, research and personal factors. Informants generally either carefully weighed up various approaches to research participation or responded instinctively. They supported the principle of using routinely collected, anonymized clinical biological samples for research without explicit consent, but regarded this as less acceptable if researchers were motivated primarily by commercial gain.ConclusionsThis bottom‐up approach to ascertaining public views on pandemic clinical research has identified support for more proportionate research protection procedures for publically funded, low‐risk studies.

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Section: Discussionmentioning

confidence: 93%

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Gobat

Gal

Butler

et al. 2017

Health Expectations

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“…This finding aligns with previous work suggesting that decisions about research participation are sometimes based on heuristics. 15 , 16 That is, some individuals may use decision-making shortcuts based on factors such as previous views about the study intervention, initial impressions of the research, and trust in the institution or staff. For example, one study identified the affect heuristic, whereby individuals make decisions based on an initial emotional reaction, as a driver of research decisions among adolescents.…”

Section: Discussionmentioning

confidence: 99%

“…For example, one study identified the affect heuristic, whereby individuals make decisions based on an initial emotional reaction, as a driver of research decisions among adolescents. 15 Christofides and colleagues 16 argue that heuristics can be a valuable tool in highly complex situations where there is no optimal solution to the question at hand, such as whether to enroll in research.…”

Section: Discussionmentioning

confidence: 99%

Assessing Parent Decisions About Child Participation in a Behavioral Health Intervention Study and Utility of Informed Consent Forms

et al. 2020

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Key Points Question Is the timing of parents' decision on whether to enroll their children in research associated with review of the informed consent form? Findings This online survey study of 88 parents who either enrolled (n = 67) or declined to enroll (n = 21) their child in a weight management intervention study revealed that 67% decided whether to enroll before receiving the consent form. Twenty-five percent who remembered receiving the consent form reported that it taught them new information. Meaning The findings of this study suggest that regulatory review and interventions to improve decision-making should focus on early engagement throughout the recruitment and consent process rather than just consent forms to affect decision-making.

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“…A recent study on decisions to participate in research with young people with cystic fibrosis (CF) and their parents provides some initial evidence to illustrate our point (Christofides et al 2016). CF is a chronic condition most often diagnosed in early childhood.…”

Section: Problems In the Foundations Of Research Ethics Oversight Relmentioning

confidence: 99%

“…Individuals with CF are thus well positioned to appreciate both the benefits and the burdens of research participation. In an interview study with youth with CF and their parents, Christofides et al (2016) found that, in general, they did not make decisions about consenting to participate in a study by carefully weighing all available information about the risks and benefits of the study to them. Many of the participants did consider these factors, but it was as part of a heuristic pathway.…”

Section: Problems In the Foundations Of Research Ethics Oversight Relmentioning

confidence: 99%

Developing Psychologically Compelling Understanding of the Involvement of Humans in Research

O’Doherty

Burgess

2019

Hu Arenas

Self Cite

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Research conducted on humans has a long history of ethical protections, with the Nuremberg trials in 1945 and 1946 triggering stronger protection across most jurisdictions. While there have been many reorientations and corrections in the emphasis of codes protecting human research participants, all have implicitly assumed a conception of human decision-making and the person that are psychologically not feasible. In this paper, we examine two problematic assumptions dominant in many research ethics guidelines: (1) implicit reliance on a model of classical rationality in conceptualizing the process whereby individuals make a decision of whether to give consent to participate in a study and (2) the assumption of autonomous subjects in the bioethical principle of autonomy and in operationalizing informed consent processes. For both of these problems, we outline theoretical psychological work that provides more compelling accounts of (1) human decision-making and rationality as bounded and ecological and (2) of personhood and agency as relational and emergent. We conclude by considering approaches to bioethics that are compatible with such conceptions of personhood and therefore provide a more satisfactory framework for a relational ethics.

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Heuristic decision-making about research participation in children with cystic fibrosis

Cited by 15 publications

References 37 publications

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Talking to the people that really matter about their participation in pandemic clinical research: A qualitative study in four European countries

Assessing Parent Decisions About Child Participation in a Behavioral Health Intervention Study and Utility of Informed Consent Forms

Developing Psychologically Compelling Understanding of the Involvement of Humans in Research

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