Central to this essay is the understanding that varied communities may have an inherent and unrecognised culture of their own and this culture may be detrimental to their core. Bioethics constitutes one such community and is embedded in norms and values comprising its own culture. I use exclusion of religion or simply ‘irreligion’ as an example of a cultural element that may be established and so shape the culture of bioethics. Irreligious bioethics includes both overt religious preclusion and the more (...) pervasive form of religious marginalisation. This norm is narrated into the culture of bioethics with justifications sustaining it. Irreligious bioethics is inadmissible as it claims illegitimate neutrality, is a misuse of expertise and results in a variety of harms. As bioethics is influential in society, those engaged should be critically reflective and aware of harmful cultural elements whilst also possessing the honesty, courage and capacity to change them. (shrink)

In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder (...) the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (shrink)

Altered Inheritance is essential reading for anyone interested in genome editing and its ethical and social implications. Current genome editing technologies are rapidly making science fiction a reality. Indeed, it is a marvelous time for genetics, largely due to CRISPR-Cas tools being adopted in research and commercial sectors. While scientists were able to alter DNA for over thirty years, CRISPR offers faster, cheaper, and more accurate methods to remove, add, or alter genes. Applications abound, with researchers working to develop therapies (...) to treat a wide range of genetic disorders. However, as Françoise Baylis so aptly states, although “CRISPR shows great promise for therapeutic use, it raises thorny ethical... (shrink)

Volume 20, Issue 4, May 2020, Page 80-82.

The authority of bioethics as a field of inquiry and of bioethicists as scholars with a distinctive expertise is being questioned on various fronts. Sarah Franklin’s 2019Naturecommentary ‘Ethical research – the long and bumpy road from shirked to shared’ is the latest example. In this paper, we respond to these challenges by focusing on two key issues. First, we discuss the theory and practice of bioethics. We argue that both of these endeavours are fundamental components of this field of inquiry (...) and that bioethics cannot be reduced to the contribution that it makes to the production of biopolicy, as Franklin suggests. Second, we contend that bioethicists have distinctive skills and knowledge that place them at an epistemic advantage in discussing normative questions. Hence, we reject views that deny the specific contribution that bioethicists can bring to assessing the ethics and governance of science and technology. We conclude by arguing that—despite formal and substantive differences between disciplines—philosophers, social scientists and other scholars should join forces and engage in critical friendships rather than turf wars to move towards the just governance of science and technology. (shrink)

BackgroundResearch proactively and deliberately aims to bring about specific changes to how societies function and individual lives fare. However, in the ever-expanding field of ethical regulations and guidance for researchers, one ethical consideration seems to have passed under the radar: How should researchers act when pursuing actual, societal changes based on their academic work?Main textWhen researchers engage in the process of bringing about societal impact to tackle local or global challenges important concerns arise: cultural, social and political values and institutions (...) can be put at risk, transformed or even hampered if researchers lack awareness of how their ‘acting to impact’ influences the social world. With today’s strong focus on research impacts, addressing such ethical challenges has become urgent within in all fields of research involved in finding solutions to the challenges societies are facing. Due to the overall goal of doing something good that is often inherent in ethical approaches, boundaries to researchers’ impact of something good is neither obvious, nor easy to detect. We suggest that it is time for the field of bioethics to explore normative boundaries for researchers’ pursuit of impact and to consider, in detail, the ethical obligations that ought to shape this process, and we provide a four-step framework of fair conditions for such an approach. Our suggested approach within this field can be useful for other fields of research as well.ConclusionWith this paper, we draw attention to how the transition from pursuing impact within the Academy to trying to initiate and achieve impact beyond the Academy ought to be configured, and the ethical challenges inherent in this transition. We suggest a stepwise strategy to identify, discuss and constitute consensus-based boundaries to this academic activity. This strategy calls for efforts from a multi-disciplinary team of researchers, advisors from the humanities and social sciences, as well as discussants from funding institutions, ethical committees, politics and the society in general. Such efforts should be able to offer new and useful assistance to researchers, as well as research funding agencies, in choosing ethically acceptable, impact-pursuing projects. (shrink)