Kristien Hens

The sources, extent and margins of parental obligations in taking decisions regarding their children’s medical care are subjects of ongoing debates. Balancing children’s immediate welfare with keeping their future open is a delicate task. In this paper, we briefly present two examples of situations in which parents may be confronted with the choice of whether to authorise or demand non-therapeutic interventions on their children for the purpose of fertility preservation. The first example is that of children facing cancer treatment, and the second of children with Klinefelter syndrome. We argue that, whereas decisions of whether to preserve fertility may be prima facie within the limits of parental discretion, the right to an open future does not straightforwardly put parents under an obligation to take actions that would detect or relieve future infertility in their children—and indeed in some cases taking such actions is problematic.

This chapter argues that a developmental view on life may shed light on the role bioethicists can play in research projects. In the first section, I look at the meaning of epigenetics. Epigenetics nowadays refers to the molecular mechanisms regulating gene expression. However, inspired by the legacy of Conrad Waddington, it also implies a developmental view of life. I give an overview of existing bioethical discussions regarding epigenetics, using the example of research into developmental diversity in general and autism specifically to suggest that such a developmental approach may imply focusing on dynamics, context and experiences in normative reflection. Finally, I give some suggestions as to what the role of bioethicists could be in relation to the aims and subjects of responsible science.

In this paper, we explore the ethical complexities of deep-sea mining and scientific exploration. We focus on the extractivist underpinnings of Western scientific discovery, arguing that the desire to make the unknown known often leads to exploitative practices, jeopardizing fragile ecosystems. Traditional ethical frameworks, which require knowledge of the subjects of moral consideration, are inadequate for reflecting on the scientific exploration of vast unknowns of the deep-sea. Instead we propose an ethics of attunement—a relational approach that emphasizes engagement without extraction. Drawing on examples from art and historical scientific practices, we show non-extractive modes of knowing can inspire ethical scientific exploration. The works of Eugen van Ransonnet and Marianne North exemplify ways of observing ecosystems without disrupting their integrity. The paper further explores the potential of sound as a medium for attunement, leveraging Pauline Oliveros’ Deep Listening concept to advocate for an epistemic humility. We suggest that engaging with art can foster imaginative frameworks necessary for non-extractivist scientific exploration.

Purpose: There is a widespread recognition that biomedical explanations offer benefits to those diagnosed with a mental disorder. Recent research points out that such explanations may nevertheless have stigmatizing effects. In this study, this ‘mixed blessing’ account of biomedical explanations is investigated in a case of philosophical interest: Tourette Syndrome. Method: We conducted a vignette survey with 221 participants in which we first assessed quantitative attributions of blame as well as the desire for social distance for behavior associated with Tourette Syndrome. Results: In our study, it is confirmed that in the case of biomedical explanations, less blame is attributed than in the case of psychosocial explanations. When presented with a mixed explanation stressing an entanglement of biological and psychosocial factors this did not increase blame attribution. The desire for social distance is unaffected by the type of explanation but the participants’ free text feedback indicates this might obfuscate an underlying dilemma between stigma and blame revealed in recent research. Conclusion: There seems to be potential for blame reduction in explanations where biological and psychosocial factors are entangled. However, dynamic, ‘epigenetic’, explanations require further qualitative research to be performed as well as a philosophical framework to account for the ‘mixed blessings’ account.

There has been a spurt in both fundamental and translational research that examines the underlying mechanisms of the human microbiome in psychiatric disorders. The personalized and dynamic features of the human microbiome suggest the potential of its manipulation for precision psychiatry in ways to improve mental health and avoid disease. However, findings in the field of microbiome also raise philosophical and ethical questions. From a philosophical point of view, they may yet be another attempt at providing a biological cause for phenomena that ultimately cannot be so easily localized. From an ethical point of view, it is relevant that the human gut microbiome comprises data on the individual’s lifestyle, disease history, previous medications, and mental health. Massive datasets of microbiome sequences are collected to facilitate comparative studies to identify specific links between the microbiome and mental health. Although this emerging research domain may show promise for psychiatric patients, it is surrounded by ethical challenges regarding patient privacy, health risks, effects on personal identity, and concerns about responsibility. This narrative overview displays the roles and advances of microbiome research in psychiatry and discusses the philosophical and ethical implications of microbiome big data and microbiome-based interventions for psychiatric patients. We also investigate whether these issues are really “new,” or “old wine in new bottles.”

BackgroundPrevention of mother to child transmission of HIV remains a key public health priority in most developing countries. The provider Initiated Opt – Out Prenatal HIV Screening Approach, recommended by the World Health Organization lately has been adopted and translated into policy in most Sub – Saharan African countries. To better ascertain the ethical reasons for or against the use of this approach, we carried out a literature review of the ethics literature.MethodsPapers published in English and French Languages between 1990 and 2015 from the following data bases were searched: Pubmed, Cochrane literature, Embase, Cinhal, Web of Science and Google Scholar. After screening from 302 identified relevant articles, 21 articles were retained for the critical review.DiscussionMost authors considered this approach ethically justifiable due to its potential benefits to the mother, foetus and society. The breaching of respect for autonomy was considered acceptable on the grounds of libertarian paternalism. Most authors considered the Opt - Out approach to be less stigmatizing than the Opt - In. The main arguments against the Opt - Out approach were: non respect of patient autonomy, informed consent becoming a meaningless concept and the HIV test becoming compulsory, risk of losing trust in health care providers, neglect of social and psychological implications of doing an HIV test, risk of aggravation of stigma if all tested patients are not properly cared for and neglect of sociocultural peculiarities.ConclusionsThe Opt – Out approach could be counterproductive in case gender sensitive issues within the various sociocultural representations are neglected, and actions to offer holistic care to all women who shall potentially test positive for HIV were not effectively ascertained. The Provider Initiated Opt – Out Prenatal HIV Screening option remains ethically acceptable, but deserves caution, active monitoring and evaluation within the translation of this approach into to practice.

Autism Spectrum Condition presents a challenge to social and relational accounts of the self, precisely because it is broadly seen as a disorder impacting social relationships. Many influential theories argue that social deficits and impairments of the self are the core problems in ASC. Predictive processing approaches address these based on general purpose neurocognitive mechanisms that are expressed atypically. Here we use the High, Inflexible Precision of Prediction Errors in Autism approach in the context of cultural niche construction to explain atypicalities of the relational self, specifically its minimal, extended, and intersubjective aspects. We contend that the social self in ASC should not be seen as impaired, but rather as an outcome of atypical niche construction. We unpack the scientific, ethical, and practical consequences of this view, and discuss implications for how the challenges that autistic persons face should be approached.