Data, disability and research on the dead.

Abstract

One of the insights gained from editing a journal is to see early trends in the research topics of submissions. The ethics of data management in healthcare is an issue on which we have published a number of papers over the past decade. It seems like only yesterday we commissioned a themed issue of The New Bioethics on personalized medicine, much of it concerned with data ownership and sharing (e.g. Montgomery 2017, Lawler and Maughan 2017), but in fact that was five years ago. Much has happened since then and almost a half of this issue’s content is devoted to various aspects of data management in bioethics. In his review article, Althobaiti considers a broad sweep of the roles of big data in personalized healthcare and the ethical challenges associated with its use. He covers public health surveillance, its implications, and the challenges of ‘next generation’ technologies, including robotics and 3D printing and he gives his recommendations on how patients privacy can be protected in personalized healthcare in future. Karabekmez focuses particularly on data ethics and genomics. He examines the complexities of anonymization of data and enhancing security whilst at the same time allowing individuals access to their own data and sharing data access with third parties. As he neatly puts it, ‘ ... each new technology comes with its own backdoor, with digital piracy developing at the same pace’. After consideration of data use in synthetic biology, biomedical devices and genetic surveillance, he concludes by looking at some related ethical dilemmas arising from the use of AI in association with ‘big data’. He highlights that ‘AI is just a tool like a stethoscope.’ It enables us to do things we could not do without the tool but accountability for decisions made on the basis of its use, remains with the physician. The other papers in this issue explore important advances at both ends of life. As the abortion debate in the US becomes increasingly strident at the time of writing, yet remaining essentially a ‘dialogue of the deaf,’ Tunc’s paper on fetal surgery is timely. She explores the way in which the specialty has been politicized in that debate in the US. However her primary aim is to ‘open a new space for active debate concerning fetal surgery in terms of how it medicalizes pregnancy, pathologizes diversity, contributes to the valuation of life, and emphasizes “perfect babies” at any cost.’ the new bioethics, Vol. 27 No. 4, 2021, 293–294