It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in a way (...) that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future. (shrink)

In the last few years, justice has emerged as a matter of concern for the contemporary constitution of technoscience. Increasingly, both practicing scientists and engineers and scholars of science and technology cite justice as an organizing theme of their work. In this essay, I consider why “science and justice” might be arising now. I then ask after the opportunities, but also the dangers, of this formation. By way of example, I explore the openings and exclusions created by the recent conjugation (...) of science and justice in the field of personal genomics. Finally, I conclude with reflections on what other forms “science and justice” might take, and what might be gained or lost in fostering them. (shrink)

In this paper, I interrogate an ethical obligation to participate in genomics research on the basis of solidarity. I explore two different ways in which solidarity is used to motivate participation in genomics research: as an appeal to participate in genomic research because it cultivates solidarity and as an appeal to participate in genomic research because it expresses solidarity. I critique those appeals and draw lessons from them for how we ought to understand solidarity. The working definition of solidarity that (...) I defend is that solidarity involves recognizing another creature, person, or persons as, like ourselves, vulnerable to injustice and entails acting in ways that contribute to creating, reforming, and participating in institutions that are aimed at enhancing their flourishing. I argue that participating in genomics research is not an expression of solidarity. Participation in research may be praiseworthy, a “good thing to do,” but actually cultivating and expressing solidarity requires much more of us. (shrink)

Mirroring the set of questions explored in the special report in which this essay appears and through a critical Cree standpoint, this essay poses three provocations intended to upend habits of thought relative to notions of goodness, biocitizenship, and the democratization of scientific pursuit. Styled as foreplay, the essay warms the reader up to the desirable possibility of being a bad biocitizen. I briefly establish the colonial conditions under which the fields of genomic science, biomedical research, and bioethics have been (...) made possible. I then offer Indigenous Science, Technology, and Society as an alternative project aimed at disturbing the territorial, political, and morally inflected claims of nation‐states and their citizens, research institutions and their researchers, and bioeconomies and their consumers to continue to possess Indigenous territories and to study Indigenous bodies while controlling the bioethical principles, protocols, and policies for doing so. The work of Indigenous STS seeks to break down the bounded knowledges of disciplinary reason and map the networked interrelations of problems inhibiting and solutions strengthening the empowerment of Indigenous peoplehoods. (shrink)