Kristien Hens

Our research describes the experiences, views, and attitudes of participants of mediation dialogue groups involving non-related traffic accidents regarding their participation and related topics, such as responsibility, rehabilitation, and restoration. In Belgium, the criminal law holds that victims and offenders need to be informed about the option of entering a restorative mediation process during criminal proceedings. Mediation is voluntary and provided by an independent state-funded organization. We collected the data through individual semi-structured in-depth interviews with participants of two mediation dialogue groups. The data were analyzed through reflexive thematic analysis. We identified three main themes: (a) the importance of shared stories, (b) blurred boundaries, and (c) opportunities and obstacles for repair. Overall, our analysis suggests that mediation involving similar but non-related incidents may provide the participants with valuable knowledge and insights about one another's lives and thoughts and lead to mutual understanding and support. For some, it may even involve a transformative experience. Importantly, our analysis reveals that (a) the presence of a “shared story” and (b) a group dynamic in which participants feel sufficiently at ease with each other are pivotal to achieving a sense of connection and resonance that allows for such mutual understanding and support. These appear to be prerequisites for enabling any kind of healing.

Background Truth-telling in health care is about providing patients with accurate information about their diagnoses and prognoses to enable them to make decisions that can benefit their overall health. Physicians worldwide, especially in the United Kingdom (U.K.) and the United States (U.S.), openly share such medical information. Bangladesh, however, is a Muslim-majority society with different social norms than Western societies. Therefore, we examined whether Muslim culture supports truth disclosure for patients, particularly how and to what extent medical information about life-threatening diseases is provided to patients in Bangladesh. Methods This was a phenomenological qualitative study. We conducted thirty in-depth interviews with clinicians, nurses, patients and their relatives at Shaheed Suhrawardy Medical College Hospital in Dhaka, Bangladesh. We also used observations to explore interactions between patients, families and healthcare professionals regarding their involvement in medical decisions and truth disclosure issues. NVivo software was used to identify common themes, and a thematic analysis method was utilised to analyse the datasets. Results This study identified three recurring themes relevant to the ethics and practice of truth disclosure: best interest rather than autonomy, the ambivalent value of deception and who understands what. The participants revealed that physicians often withhold fatal medical prognoses from terminally ill patients to ensure the best healthcare outcomes. The results indicate that deception towards patients is commonly accepted as a means of reducing burden and providing comfort. The participants opined that true medical information should be withheld from some patients, assuming that such disclosures may create a severe burden on them. Whether or to what extent medical information is disclosed primarily depends on a family’s wishes and preferences. Conclusions While truth disclosure to patients is considered an ethical norm in many cultures, such as in the U.K. and the U.S., the practice of concealing or partially revealing severe medical prognoses to patients is an actual medical practice in Bangladeshi society. This study emphasises the importance of recognising a patient’s active involvement and respecting the cultural values that shape family involvement in medical decision-making. These findings may have significant policy and practical implications for promoting patient autonomy within Bangladeshi family dynamics and religious-based cultural values.

In this chapter, we describe three areas within the broad field of ecogenomics or postgenomics: epigenetics, proteomics, and microbiomics. We argue that these fields challenge traditional bioethics in different ways. Since epigenetic, proteomic, and microbiomic data may contain phenotypical information, they may intensify discussions about consent, privacy, and return of results. But these fields also firmly position organisms, including human beings, as deeply entangled with their environments, as constituted by context, history, and experiences as much as genes. This yields new insights into concepts of health and development. We discuss precision medicine as an example of a systemic approach to health. We argue that acknowledging the entanglement of organism and environment also means recognizing the importance of interdisciplinarity for bioethics and thinking together biomedical ethics and environmental ethics.

The screening of in vitro embryos resulting from in vitro fertilization treatment for chromosomal abnormalities has as a primary aim to help patients achieve a successful pregnancy. Most IVF centers will not transfer aneuploid embryos, as they have an enhanced risk of leading to implantation failure and miscarriage. However, some aneuploidies, such as trisomy-21, can lead to viable pregnancies and to children with a variable health prognosis, and some prospective parents may request transfer of such embryos. I present two cases where the testing for and detection of trisomy-21 can lead to conflicts between IVF professionals and patients and argue that in most such cases respect for choices of patients should prevail

Current and past pandemics have several aspects in common. It is expected that all members of society contribute to beat it. But it is also clear that the risks associated with the pandemic are different for different groups. This makes that appeals to solidarity based on technocratic risk calculations are only partially successful. Objective ‘risks of transmission’ may, for example, be trumped by risks of letting down people in need of help or by missing out certain opportunities in life. In this paper we argue that a rapprochement of the insights of standpoint epistemology with pandemic science and pandemic policy making may be an important step toward making pandemic science more accurate and pandemic calls for solidarity more effective.

Beliefs about the moral status of children have changed significantly in recent decades in the Western world. At the same time, knowledge about likely consequences for children of individual, parental, and societal choices has grown, as has the array of choices that (prospective) parents may have at their disposal. The intersection between these beliefs, this new knowledge, and these new choices has created a minefield of expectations from parents and a seemingly ever-expanding responsibility towards their children. Some of these new challenges have resulted from progress in genetics and neuroscience. It is these challenges that we focus on in this introduction and volume.

In this paper, I review some of the discussions on procreative beneficence and procreative autonomy in the context of postponed motherhood and compare the considerations to the context of advanced paternal age. In doing so, I will give an overview of the main scientific findings with regard to how older age in men affects the health of future offspring. I shall demonstrate how the discrepancy between the media coverage and policies on postponed motherhood and postponed fatherhood mistakenly suggests that women are more responsible than men for the health of offspring.

Should parents aim to make their children as normal as possible to increase their chances to “fit in”? Are neurological and mental health conditions a part of children’s identity and if so, should parents aim to remove or treat these? Should they aim to instill self-control in their children? Should prospective parents take steps to insure that, of all the children they could have, they choose the ones with the best likely start in life? This volume explores all of these questions and more. Against the background of recent findings and expected advances in neuroscience and genetics, the extent and limits of parental responsibility are increasingly unclear. Awareness of the effects of parental choices on children’s wellbeing, as well as evolving norms about the moral status of children, have further increased expectations from (prospective) parents to take up and act on their changing responsibilities. The contributors discuss conceptual issues such as the meaning and sources of moral responsibility, normality, treatment, and identity. They also explore more practical issues such as how responsibility for children is practiced in Yoruba culture in Nigeria or how parents and health professionals in Belgium perceive the dilemmas generated by prenatal diagnosis.

ABSTRACTIs the question ‘will you regret it if you do this?’ helpful when people face difficult life decisions, such as terminating a pregnancy if a disability is detected or deciding to become a parent? Despite the commonness of the question in daily life, several philosophers have argued lately against its usefulness. We reconstruct four arguments from recent literature on regret, transformative experience and the use of imagination in deliberation. After analysis of these arguments we conclude that the prospect of regret remains a useful deliberative heuristic, provided four conditions are fulfilled. If the prospect of regret is arrived at via reflection on one’s values, in a non-coercive context, when well-informed about factual circumstances, and in a process of self-commitment, the question of what one will regret is a helpful device to get in touch with one’s deepest concerns that give reasons to act in a particular way.

This report is grounded in several social concepts: First, the primary goal of genetic testing should be to promote the well-being of the child. Second, the recognition that children are part of a network of family relationships supports an approach to potential conflicts that is not adversarial but, rather, emphasizes a deliberative process that seeks to promote the child's well-being within this context. Third, as children grow through successive stages of cognitive and moral development, parents and professionals should be attentive to the child's increasing interest and ability to participate in decisions about his or her own welfare

Procreation in the face of an apocalypse: Some ethical considerations In the field of procreation ethics both Kantian and consequentialist arguments have been developed purporting to show the moral impermissibility of having (more than two) children. A survey of the most important arguments leaves us wondering whether one could derive general obligations or prohibitions from abstract principles and apply them to deeply personal decisions about whether or not to have children (and how many). At the same time it is undeniably true that having children, however private the decision to procreate may feel, has an impact far beyond the private sphere. While we argue that the answer to the question whether or not to have a child cannot be derived from moral principles, we recognize that moral considerations about global and intergenerational justice do pertain to the question. We therefore develop an alternative framework for traditional Kantian and consequentialist approaches in procreation ethics, which we call holistic virtue ethics.

The diagnosis of autism is on the rise. Autistic people, parents, professionals, and policy makers alike face important questions about the right approach toward autism. For example, there are questions about the desirability of early detection, the role and consequences of underlying cognitive theories, and whether autism is a disorder to be treated or an identity to be respected. How does the fact that autism is a heterogeneous concept affect the answers to these questions? Who has the authority or knowledge to speak on behalf of people with autism? In this paper, we describe a cluster of research topics which should be on the agenda of the emerging field of autism ethics. These topics include the very concept of autism itself, the question whether autism is primarily an identity or a disorder, the ethical questions that parents of autistic children face, metaethical questions, the ethical consequences of epistemological questions, and a cluster of questions related to social justice, stigma, and paternalism.

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in daily life. Genes make sense on an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members.

The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.

In this paper, we report the results from an experimental reproductive ethics study exploring questions about reproduction and parenthood. The main finding in our study is that, while we may assume that everyone understands these concepts and their relationship in the same way, this assumption may be unwarranted. For example, we may assume that if ‘x is y’s father’, it follows that ‘y is x’s child’. However, the participants in our study did not necessarily agree that it does follow. This means, at the very least, that we need to make sure all parties in a debate have the same relationships in mind when talking about reproduction and parenthood. Moreover, it gives us reason to explore more carefully the conditions which support or undermine the connections between these concepts. This cannot come from purely theoretical reasoning, nor from empirical research alone, but from the alliance between the two.

Psychiatric diagnoses such as Autism Spectrum Disorder (ASD) are primarily attributed on the basis of behavioral criteria. The aim of most of the biomedical research on ASD is to uncover the underlying mechanisms that lead to or even cause pathological behavior. However, in the philosophical and sociological literature, it has been suggested that autism is also to some extent a ‘social construct’ that cannot merely be reduced to its biological explanation. We show that a one-sided adherence to either a biological or a social explanation leads to a moral dilemma, a Catch-22, for autistics and for those living with them. Such explanations close the space for self-identifying as autistic and at the same time being considered to be in good mental health. They foreclose the possibility of making sense of the lived experience of (and with) autistics. In this paper we argue that such lack of space for moral imagination inherently leads to scientific stalemate. We propose that one can only go beyond this stalemate by taking an ethical stance in theorizing, one that enables better intersubjective understanding. Only on such a view can behavior and biology be linked without either disconnecting them or reducing the one to the other.