Kristien Hens

This paper proposes using the term “Bioethics-in-Science” (BiS) to denote and delineate a set of emerging methodological approaches entangling bioethical inquiry directly within scientific practice. Drawing inspiration from Van Rensselaer Potter’s original vision of bioethics as a collaborative bridge between biology and ethics, BiS represents a community of practice aiming to contribute to bioethical inquiry in three key ways. First, it reframes the relationship between ethics and science by treating scientific practice as inherently value-laden and recognizing scientists’ relevant ethical expertise. Second, it develops methods—including ethics notebooks, collaborative workshops, and conceptual mapping—which facilitate a shift from mere external evaluation towards continuous ethical deliberation within research environments. Third, it demonstrates how bioethical inquiry can actively contribute to improving scientific practice through the co-creation of knowledge and values. Through case studies from synthetic biology, neurodiversity research, and proteomics, we illustrate how BiS arose from and operates in practice, and examine the challenges of crossing disciplinary boundaries. As such, we position BiS as offering a pathway for bioethical inquiry to move beyond its peripheral position vis-à-vis the sciences and engage meaningfully with the normative dimensions of scientific knowledge production instead, ultimately contributing to both better ethics and science.

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.

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.

It is commonly believed that the etiology of autism is at least partly explained through genetics. Given the complexity of autism and the variability of the autistic phenotype, genetic research and counseling in this field are also complex and associated with specific ethical questions. Although the ethics of autism genetics, especially with regard to reproductive choices, has been widely discussed on the public fora, an in depth philosophical or bioethical reflection on all aspects of the theme seems to be missing. With this literature review we wanted to map the basic questions and answers that exist in the bioethical literature on autism genetics, research, counseling and reproduction, and provide suggestions as to how the discussion can proceed. We found 19 papers that fitted the description of “bioethics literature focusing on autism genetics,” and analyzed their content to distill arguments and themes. We concluded that because of the complexity of autism, and the uncertainty with regard to its status, more ethical reflection is needed before definite conclusions and recommendations can be drawn. Moreover, there is a dearth of bioethical empirical studies querying the opinions of all parties, including people with autism themselves. Such empirical bioethical studies should be urgently done before bioethical conclusions regarding the aims and desirability of research into autism genes can be done. Also, fundamental philosophical reflection on concepts of disease should accompany research into the etiology of autism. © 2016 Wiley Periodicals, Inc.