Deep uncertainties in bioethics: genetic research, preventive medicine, reproductive decisions (BIOUNCERTAINTY)
A research project financed by the European Research Council (ERC) Starting Grant between 2019 and 2024; no. 805498.
Principal Investigator: Tomasz Żuradzki.
Deep uncertainties in bioethics: genetic research, preventive medicine, reproductive decisions
Uncertainty is everywhere, as the saying goes, but rarely considered in ethical reflections. This project aims to reinterpret ethical discussions on current advances in biomedicine: instead of understanding bioethical positions as extensions of classical normative views in ethics (consequentialism, deontologism, contractualism etc.), my project interprets them more accurately as involving various normative approaches to decision making under uncertainty. The following hard cases in bioethics provide the motivation for research:
1) Regulating scientific research under uncertainty about the ontological/moral status (e.g. parthenogenetic stem cells derived from human parthenotes) in the context of meta-reasoning under normative uncertainty.
2) The value of preventive medicine in healthcare (e.g. vaccinations) in the context of decision-making under different kinds of indeterminacy.
3) Population or reproductive decisions (e.g. preimplantation genetic diagnosis) in the context of valuing mere existence.
The main drive behind this project is the rapid progress in biomedical research combined with new kinds of uncertainties. These new and “deep” uncertainties trigger specific forms of emotions and cognitions that influence normative judgments and decisions. The main research questions that will be addressed by conceptual analysis, new psychological experiments, and case studies are the following: how do the heuristics and biases (H&B) documented by behavioral scientists influence the formation of normative judgments in bioethical contexts; how to demarcate between distorted and undistorted value judgments; to what extent is it permissible for individuals or policy makers to yield to H&B. The hypothesis is that many existing bioethical rules, regulations, practices seem to have emerged from unreliable reactions, rather than by means of deliberation on the possible justifications for alternative ways to decide about them under several layers and types of uncertainty.
T. Żuradzki (2020), The Fifth Face of Fair Subject Selection: Population Grouping, American Journal of Bioethics 20 (2): 41-43
The article by MacKay and Saylor (2020) claims that the principle of fair subject selection yields conflicting imperatives (e.g. in the case of pregnant women) and should be understood as “a bundle of four distinct
sub-principles” (i.e. fair inclusion, burden sharing, opportunity, distribution of third-party risks), each having conflicting normative recommendations. In my commentary article, written from the philosophical perspective, I notice a number of interrelated problems which I believe have not been discussed thoroughly in the target article: (1) the precise way in which health care priority setting should influence the content of health research priority setting and fair inclusion principles; (2) the distinction between group and individual benefits and burdens from clinical research; (3) the reference class problem in medical research.
T. Żuradzki, P.G. Nowak (2019), Deep Uncertainties in the Criteria for Physician Aid-in-Dying for Psychiatric Patients, American Journal of Bioethics 10(19):54-56
In their insightful article, Brent Kious and Margaret Battin (2019) correctly identify an inconsistency between an involuntary psychiatric commitment for suicide prevention and physician aid in dying (PAD). They declare
that it may be possible to resolve the problem by articulating “objective standards for evaluating the severity of others’ suffering,” but ultimately they admit that this task is beyond the scope of their article since the solution
depends on “a deep and difficult” question about comparing the worseness of two possible scenarios: letting someone die (who could have been helped) with not letting someone die (whose suffering could only be alleviated by death). In our commentary, we argue that creating such standards is more difficult than the authors assume because of the many types of deep uncertainties we have to deal with: (1) diagnostic, (2) motivational, and (3) existential.
T. Żuradzki, Regulating scientific research under deep uncertainty: the case of ontologically ambiguous entities
Human embryos in the early stages of development are ontologically ambiguous entities. The same concerns e.g. induced pluripotent stem cells reprogrammed from human somatic cells, embryo-like products of parthenogenesis, human-nonhuman chimeras, human organoids. This ontological ambiguity (an example of deep uncertainty) which has been discussed extensively by philosophers and bioethicists in recent years is an underlying reason for the uncertainty about the moral and legal status of these beings. In my presentation – a part of a larger project aimed at analyzing decision theory as a model for reasoning in ethics – I want to discuss whether this uncertainty about status cast doubt on the arguments claiming strong or even full protection of these beings. Or is it the other way around: does it give a reason for acting in a cautious way and treating these entities as if they had very high status (a higher-order precautionary principle). In recent years there have been a number of attempts to understand and to find the relevant criteria for making decisions under deep uncertainty, but this topic is still unexplored in the case of ontologically ambiguous entities. Some scholars have proposed the decision theoretic approach modeled on the cases of factual risk according to which we ought (although the very nature of this ought may be contested) to represent any higher-order uncertainties in terms of those first-order (e.g. that we ought to evaluate the subjective probabilities of different doctrines about ontologically ambiguous entities and combine them with the disvalues attached by these doctrines to the creation/destruction of these entities and/or social benefits of this kind of research). I will show that this approach faces serious objections (e.g. the problem of inter-theoretical comparisons of values) and the decision theoretic approach should be understood in this case as a metaphor (not a model).
T. Żuradzki, Reporting incidental findings under uncertainty
When conducting biomedical research (e.g. genomic), researchers may obtain information that is beyond the aims of the study but may be relevant to the participants. An emerging consensus says that reporting incidental findings to participants should be based on the potential for medical benefit. Schaefer & Savulescu (2018) have recently criticized this “best-medical-interests” standard as being too narrow. They have argued that research subjects have a right to know about any comprehensible piece of information about them which is generated by the research which they are participating in, even if it is of no direct medical benefit to them. In my paper I will criticize their three main arguments based on the notions of autonomy, interests and privacy. I will show that they use a very narrow concept of autonomy as the ability to make informed decisions; they do not take into account the psychology of genetic risk perception; and they rely on an overly individualistic approach to research ethics.
T. Żuradzki The conceptualization of vaccination refusals: between science denial and violation of rational choice
Vaccination programmes have been acknowledged as the greatest public health achievement of the last decades. Therefore, it may be surprising that growing number of people are opting not to vaccinate their children (Omer 2012). On the one hand, vaccination refusals seem to be clear examples of science denial that may result, among others reasons, from exposure to scientific fraud (an infamous report linking the measles vaccine to autism, later retracted). On the other hand, some countries (e.g. the US and Australia) offer non-medical exemptions from mandatory vaccination. It is surprising, because these kinds of exceptions are usually limited to value disagreements, but are not accepted in cases of science denial (e.g. objections to teaching evolution in schools). Moreover, reputable journals in medicine, bioethics or social science publish papers defending parental “conscientious objection” to mandatory vaccination programmes (Salmon 2006; Navin, Largent 2017). In my presentation I show there are no good reasons to assume that anyone should be allowed to refuse “to vaccinate their dependants on conscientious grounds” (Clarke et al. 2017).
First, I want to analyze a suitable ethical framework for mandatory vaccination of children or specific populations (e.g. health care personnel): public health ethics (that implies a consequentialist approach) versus traditional bioethics (that concentrates on autonomous consent and individual risk-benefit ratio).
Second, I want to discuss vaccination refusals in the context of philosophical (or legal) theories of responsibility of those who opt out for harms to others, including: i) collective action problem (e.g. few persons being unvaccinated, where herd immunity is achieved, are very unlikely to cause harm); ii) responsibility for imposing mere risks of harm to others (Jamrozik et al. 2016).
Third, I want to analyze explanations of vaccination refusal (see systematic reviews: Mills et al. 2005; Wang et al. 2014). i) Free-riding without rejecting scientific consensus. Some individuals may be pro vaccination in general, but prefer to keep children unvaccinated as long as enough others are vaccinated and risks have largely been eliminated. I will show that even if someone agrees that free-riding is not always objectionable (Dare 1998), it would be hard to establish the content of beliefs about vaccination refusal (cf. Jamrozik 2017). ii) Religious reasons. Despite of the fact that no major organized religion prohibits vaccination (Grabenstein 2013), some Catholics have questioned some vaccines as “morally illicit” (Carson, Flood 2017), because they were developed in cell cultures derived from tissue originally taken from an aborted fetus (WI-38; MRC-5). The Catholic teaching permits parents to use a vaccine despite its “illicit origin” (CDF 2008), although every act of vaccination is “a form of very remote mediate material cooperation” (PAL 2006) with the evil. Both documents underline that parents “should take recourse… to the use of conscientious objection with regard to the use of vaccines produced by means of cell lines of aborted human fetal origin” (PAL 2006). But in this context “conscientious objection” does not mean vaccination refusal, but only a symbolic act (e.g. signing a petition). iii) A mistrust concerning the necessity, safety, and efficacy of vaccines. Some people may disagree about the authority of science, and same individuals reject only the orthodox account of the risks and benefits of immunization. But these views are clearly related to the different biases that make pro-vaccination beliefs more counter-intuitive, and anti-vaccination beliefs – more intuitive, especially once vaccinations have made some diseases rare (Miton, Mercier 2015). For example: omission bias (Wroe at al. 2005); in-group favoritism (Kahan et al. 2010); identified victim effect (Hare 2012).
Research seminars of the Interdisciplinary Centre for Ethics (INCET) at the Jagiellonian University organized as a part of the BIOUNCERTAINTY research project take place (usually) on Thursdays between 5.30 and 7 pm. at the Institute of Philosophy, 52 Grodzka Street, 31-044 Kraków, room 25. Successive meetings are announced in the section News.
Seminar photos are available in INCET photo gallery.
Evidence in Law and Ethics ELE2019
Christian Dahlman (Lund)
Martin Smith (Edinburgh)
Epistemic risk and the role of non-epistemic values in ethical and legal evidential reasoning.
Reasonable doubt, higher-order evidence, statistical evidence, evidentiary thresholds in law and ethics.
Models of evidential reasoning, standards of proof, and evidence-based heuristics in law and ethics.
The concept of testimony in ethical vs legal contexts.
Epistemology of legal (esp. court) disagreement.
The ethics of belief of laymen, experts, lawyers and the judicial system.
PhD students (assistant researchers)
Piotr Bystranowski (part-time)
Jeroen Hopster (Graz) - October 2019
Konrad Rudnicki (Antwerp) - October 2019
Teresa Baron (Southampton) - November 2019