Abstract

Issues of diversity and justice featured in the 2009 edition of this Handbook, prominently marked by a concern with how questions of individual choice and autonomy delineated a space between eugenics and the ‘new genetics’ as a form of social control, even as the ability to access such ‘choice’ was differentiated (Rothman, 2009). Such concerns have by no means dissipated in the years since the previous edition. They have diversified and become reframed as the scale of medical interventions – particularly related to reproductive genetic technologies – have increased, and the geographic scope and reach of other forms of genomic and related research have extended across a global terrain. As a result, long-standing attention in social science with eugenics, disability, enhancement and ‘race’ continue to generate critical engagement but in ways that are more attentive to the complexities and paradoxes of developments in genomic science and medicine. As the chapters in this section attest, this includes the ways that the still mostly elusive promise of personalised or precision medicine, which continues to drive the field of genomics, is dependent on the participation of wider groups of people defined often as themselves ‘underserved’ populations or communities (Prainsack, 2017). It also means being attentive to the way that ‘lifestyle’ and other non-molecular data are becoming a valued resource – sometimes more than genetic information – and to discourses around genetic discrimination and insurance that are nonetheless reliant on a reductive understanding of genes. Of particular note is how a long-standing social science interest in how the autonomous individual as the distributed locus of responsibility in genomics is now conjoined by calls to attend equally to the role of the state in regulating research and access to genetic medicine, as well as the growing influence of corporate business in the management of biological and medical data. At the same time the increasing number of scholars and activists who call upon the principle that people have a right to ‘enjoy the benefits of scientific progress and its applications’, as enshrined in Article 15 of the International Covenant on Economic, Social and Cultural Rights (United Nations, 1966) begs the question of what roles states should play in ensuring that people can enjoy these benefits. How far should the duty of states go in bringing the benefits of scientific progress to fruition, and where should state actors focus their attention to reach this goal? Should they actively support, or even mandate, open science, and the ‘opening up’ of databases? Should they invest more public funds into the improvement of social determinants of health alongside investment in genomic research? Should they focus on supporting marginalised and underserved populations and address open and implicit bias? Or should they gear up their role not only as a regulator of medicine, science and research, but also as a funder?