- Protecting & promoting autonomy in (biomedical) research
- Ethics of international biomedical research
- The concept of trust and its role in autonomous decision-making
Department of Philosophy, Western University
In my master thesis and my bioethics paper based on this thesis, I have written on the tension between individual autonomy and community consent. In community consent, which is increasingly adopted in research conducted in indigenous communities and communities in the global south, a community is asked permission to conduct biomedical research in that community prior to individual informed consent. Community members have expressed the need for asking permission to the community, but this step can also limit the autonomy of individual members, as community leaders can reject research they might want to participate in. This is especially problematic in clinical research, where the protection of individual autonomy is of most importance. In face of this problem, I have argued that community consent can be important for the autonomy and identity of community members and that, in those cases, community consent is therefore prima facie justified. In my thesis, I have further argued that promotion of trust and trustworthiness can help to ensure that the decisions made by community leaders are in line with the will of community members.
Currently, I am working on a different tension within this broader question of protecting autonomy. This interdisciplinary project starts from the observation that research participation is very low and that trials can even fail because of a lack of participants. The project proposes to analyze the decision to participate in a trial from the perspective of behavioral science and, with that knowledge, develop a tool to optimize the number of participants enrolled as well as optimize the experience of the participants during the recruitment process. This tool will mainly be based on the knowledge of how the environment influences decisions and use that to optimize the environment to reach the goal of optimal recruitment and experience of participants. I am working on the subproject that focusses on the ethical issues that arise in developing such a tool. Central here is the concern that it would be unethical to bypass the autonomous decision-making capacity of people in order to reach the aforementioned goals. In other words, we would not want to “manipulate” people into participating in a study. At the same time, we do want to help people make better decisions and most decisions in the recruitment process do not live up to the standards put up by traditional theories of informed consent. The ethics subproject aims to evaluate which tools or behavioral change techniques (such as nudges) are permissible in light of these concerns and argue for those that are found permissible. This requires both analyses of philosophical concepts such as “autonomy”, as well as empirical input, such as people’s perception of certain behavioral change techniques.
Al, P. The value of communities and their consent: A communitarian justification of community consent in medical research. Bioethics. 2021;35:255-261.
Al, P. Trust, Trustworthiness, and the Conflict Between Community Consent and Individual Autonomy.
The Value of Communities and their consent. UNC Charlotte, Center for Professional and Applied Ethics, 26-01-2021
Project Title: Using behavioural science to understand and improve participation in clinical trials: A theory-based research project.
Primary Investigator: Jamie Brehaut
Other Project Members: Katie Gillies (Co-I/U of Aberdeen), Spencer Hey (Co-I/Brigham and Women’s Hospital), Justin Presseau (Co-I/OHRI), Charles Weijer (Co-I/U of Western Ontario), Pepijn Al (PhD Trainee/U of Western Ontario), Juliette Inglis (Patient Partner), and Mei-Lin Yee (Patient Partner).
Brief Description: Participation in clinical research is an essential element of improving healthcare. Any change in treatment or management should be tested before it is put into practice, and this requires patients (and others) to participate in research, usually on a volunteer basis. Despite its importance, research participation is consistently low across almost all diseases and geographical regions. The costs of low participation are many and varied, including wasted money and other resources, inability to use those resources for other purposes, delayed new treatments, faulty findings, and unnecessary risks to those who do participate. While many studies have explored this problem, they have not been informed by theories from psychology that contain considerable knowledge about how to help people make difficult decisions, and how people change their behaviour.
The overall goal for this project is to develop the knowledge and tools necessary to help patient groups, researchers, and trial sponsors optimize both the rate of participation and the experience of clinical trial recruitment. The work will proceed in four phases, including (1) reviewing the scientific literature to understand how recruitment is currently done from a theoretical perspective; (2) interviewing the range of different groups with expertise in these issues (e.g. participants, physicians, trial recruiters, and experts in the infrastructure underlying clinical research); (3) developing tools to help optimize trial recruitment (e.g. standard surveys that can identify problems before a trial begins; more participant-friendly consent forms); and (4) thinking and writing about the ethical challenges posed by these theories, to safeguard public trust in health research. Our international multidisciplinary team is uniquely qualified to do this work, which will help improve the health care system by optimizing the process of clinical trial recruitment.
Academic year 2021/2022
- Fall semester & Winter semester, 2021/2022, Intro to Philosophy, Western University, (TA)
Academic year 2020/2021
- Second semester, 2020/2021, Block 4, Political Philosophy, Utrecht University (Seminar teacher)
- First semester, 2020/2021, Block 2, Ethics and Public Policy, Utrecht University (Seminar teacher)
- First semester, 2020/2021, Block 1, Philosophical Ethics, Utrecht University (Seminar teacher)
Academic year 2019/2020
- Second semester, 2019/2020, Bock 4, Bioethics, Utrecht University (Seminar teacher)
- Second semester, 2019/2020, Bock 4, Ethics and Politics of Human Nature, Utrecht University (Seminarteacher)
- Second semester, 2019/2020, Bock 3, Introduction to Political and Social philosophy, Utrecht University (Seminar teacher)
- First semester, 2019/2020, Block 2, Ethics and Public Policy, Utrecht University (Seminar teacher)
- First semester, 2019/2020, Block 1, Philosophical Ethics, Utrecht University (Seminar teacher)
Academic year 2018/2019
- Semester 2, 2018/2019, Block 3, Introduction to Political and Social philosophy, Utrecht University (TA)