Chance Encounters

In this rigorous and necessary book, Kristien Hens brings together bioethics and the philosophy of biology to argue that it is ethically necessary for scientific research to include a place for the philosopher. As well as ethical, their role is conceptual: they can improve the quality and coherence of scientific research by ensuring that particular concepts are used consistently and thoughtfully across interdisciplinary projects. Hens argues that chance and uncertainty play a central part in bioethics, but that these qualities can be in tension with the attempt to establish a given theory as scientific knowledge: in describing organisms and practices, in a sense we create the world. Hens contends that this is necessarily an ethical activity. Examining genetic research, biomedical ethics, autism research and the concept of risk, Hens illustrates that there is no ‘universal’ or ‘neutral’ state of scientific and clinical knowledge, and that attending to the situatedness of individual experience is essential to understand the world around us, to know its (and our) limitations, and to forge an ethical future. Chance Encounters is aimed at a broad audience of researchers in bioethics, philosophy, anthropology, sociology, as well as biomedical and environmental scientists. It will also be relevant to policymakers, and the artwork by Christina Stadlbauer and Bartaku will be of interest to artists and writers working at the intersection of art and science

Chance Encounters

In this rigorous and necessary book, Kristien Hens brings together bioethics and the philosophy of biology to argue that it is ethically necessary for scientific research to include a place for the philosopher. As well as ethical, their role is conceptual: they can improve the quality and coherence of scientific research by ensuring that particular concepts are used consistently and thoughtfully across interdisciplinary projects. Hens argues that chance and uncertainty play a central part in bioethics, but that these qualities can be in tension with the attempt to establish a given theory as scientific knowledge: in describing organisms and practices, in a sense we create the world. Hens contends that this is necessarily an ethical activity. Examining genetic research, biomedical ethics, autism research and the concept of risk, Hens illustrates that there is no ‘universal’ or ‘neutral’ state of scientific and clinical knowledge, and that attending to the situatedness of individual experience is essential to understand the world around us, to know its (and our) limitations, and to forge an ethical future. Chance Encounters is aimed at a broad audience of researchers in bioethics, philosophy, anthropology, sociology, as well as biomedical and environmental scientists. It will also be relevant to policymakers, and the artwork by Christina Stadlbauer and Bartaku will be of interest to artists and writers working at the intersection of art and science

Philosophy of Science Can Prevent Manslaughter

In September 2020, the surgeon Paulo Macchiarini, who used stem cell technology to enable the transplants of artificial and donor trachea, was charged with aggravated assault in Sweden. In this comment, we argue that the Ethics Council of the Karolinska Institute should have considered issues from philosophy of science when they were brought to their attention, rather than dismiss them as irrelevant to research ethics. We demonstrate how conceptual issues of a philosophy-of-science-kind about clinical research and medical practice should be integral to research ethics

Comprehensive embryo testing. Experts opinions regarding future directions: an expert panel study on comprehensive embryo testing

What do scientists in the field of preimplantation genetic diagnosis (PGD) and preimplantation genetic screening (PGS) consider to be the future direction of comprehensive embryo testing? Although there are many biological and technical limitations, as well as uncertainties regarding the meaning of genetic variation, comprehensive embryo testing will impact the IVF/PGD practice and a timely ethical reflection is needed. Comprehensive testing using microarrays is currently being introduced in the context of PGD and PGS, and it is to be expected that whole-genome sequencing will also follow. Current ethical and empirical sociological research on embryo testing focuses on PGD as it is practiced now. However, empirical research and systematic reflection regarding the impact of comprehensive techniques for embryo testing is missing. In order to understand the potential of this technology and to be able to adequately foresee its implications, we held an expert panel with seven pioneers in PGD. We conducted an expert panel in October 2011 with seven PGD pioneers from Belgium, The Netherlands, Germany and the UK. Participants expected the use of comprehensive techniques in the context of PGD. However, the introduction of these techniques in embryo testing requires timely ethical reflection as it involves a shift from choosing an embryo without a particular genetic disease (i.e. PGD) or most likely to result in a successful pregnancy (i.e. PGS) to choosing the best embryo based on a much wider set of criteria. Such ethical reflection should take account of current technical and biological limitations and also of current uncertainties with regard to the meaning of genetic variance. However, ethicists should also not be afraid to look into the future. There was a general agreement that embryo testing will be increasingly preceded by comprehensive preconception screening, thus enabling smart combinations of genetic testing. The group was composed of seven participants from four Western Europe countries. As willingness to participate in this study may be connected with expectations regarding the pace and direction of future developments, selection bias cannot be excluded. The introduction of comprehensive screening techniques in embryo testing calls for further ethical reflection that is grounded in empirical work. Specifically, there is a need for studies querying the opinions of infertile couples undergoing IVF/PGS regarding the desirability of embryo screening beyond aneuploidy. This research was supported by the CSG, Centre for Society and Life Sciences (project number: 70.1.074). The authors declare no conflict of interest. N/A

Cutting our own keys: New possibilities of neurodivergent storying in research

Increasingly, neurodivergent people are sharing their own narratives and conducting their own research. Prominent individuals have integrated the ‘nothing about us without us’ slogan, used by neurodivergent and other disabled social activists, into academia. This article imagines a neuromixed academia. We consider how to work through challenges present in neuromixed encounters; to support cross-neurotype communication and pave the way for an ethos of community and collaboration. We explore how we might create a space in which neurodivergent experiences are seen as just one part of our complex and multifaceted identities. We do this through the process of ‘cutting our own keys’, to try out new possibilities of neurodivergent storying aimed at finding ourselves in our own stories about neurodivergence. This involves borrowing and developing methodological approaches formulated outside of research on different forms of neurodivergence, and to invent our own concepts based on our own embodied experiences and the social worlds we inhabit. Throughout, we mingle our own autoethnographic accounts in relation to research accounts and theories, as a way of illustrating the work with the text as a thinking about neurodivergence with each other in itself

Being, Knowing, and Doing: Importing Theoretical Toolboxes for Autism Studies

The aim of this article was to think with and elaborate on theories developed outside of autism research and the autistic community, and through this support the production of new autistic-led theories: theories and concepts based on autistic people's own embodied experiences and the social worlds we inhabit. The article consists of three different sections all of part of the overall umbrella, Being, knowing, and doing: Importing theoretical toolboxes for autism studies. In each section, we import useful concepts from elsewhere and tailor them to autism studies. Throughout, we mingle our own autoethnographic accounts and shared discourse in relation to research accounts and theories. Illustrating being, we explore and discuss the possibilities of critical realism in autism studies. Illustrating knowing, we explore and discuss the possibilities of standpoint theory in autism studies. Finally, illustrating doing, we explore and discuss the possibilities of neurocosmopolitics including epistemic (in)justice in autism studies. Our proposal here is for an epistemic shift toward neurodiverse collaboration. We are inviting nonautistic people to work with, not on, us, aiming at to make autism research more ethical, breaking down bureaucratic structures, and questioning poor theory and shoddy methodology. Acknowledging intersecting axes of oppression in which an individual seeks to renegotiate and reimagine what it means to belong also means to understand what needs changing in society, as it is and how we might do things differently.Output Status: Forthcoming/Available Onlin

Personal Genomes in Practice:Exploring Citizen and Healthcare Professionals’ Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design

Ongoing health challenges, such as the increased global burden of chronic disease, are increasingly answered by calls for personalized approaches to healthcare. Genomic medicine, a vital component of these personalization strategies, is applied in risk assessment, prevention, prognostication, and therapeutic targeting. However, several practical, ethical, and technological challenges remain. Across Europe, Personal Health Data Space (PHDS) projects are under development aiming to establish patient-centered, interoperable data ecosystems balancing data access, control, and use for individual citizens to complement the research and commercial focus of the European Health Data Space provisions. The current study explores healthcare users’ and health care professionals’ perspectives on personalized genomic medicine and PHDS solutions, in casu the Personal Genetic Locker (PGL). A mixed-methods design was used, including surveys, interviews, and focus groups. Several meta-themes were generated from the data: (i) participants were interested in genomic information; (ii) participants valued data control, robust infrastructure, and sharing data with non-commercial stakeholders; (iii) autonomy was a central concern for all participants; (iv) institutional and interpersonal trust were highly significant for genomic medicine; and (v) participants encouraged the implementation of PHDSs since PHDSs were thought to promote the use of genomic data and enhance patients’ control over their data. To conclude, we formulated several facilitators to implement genomic medicine in healthcare based on the perspectives of a diverse set of stakeholders.</p