Exploring the interaction between technology and morality in the field of genetic susceptibility testing: A scenario study

Abstract

With the rise of genomics promises and concerns have emerged about future possibilities for screening of genetic susceptibilities to common diseases in the population. In this article we start from the assumption that for a better understanding of the future ethical implications of genetic susceptibility screening we need to address the interaction between technological and moral developments in society. We introduce a techno-ethical scenario approach and show how it may help us to explore more systematically potential future interactions between technological and moral developments in the field of genetic susceptibility screening. The first step is a historical account of population screening, focussing on the ways in which emerging practices of (genetic) screening have been mediated by an evolving moral landscape in our society. Based on this history we present a techno-ethical scenario of the future, showing how technological developments may shape conditions in our society in which the introduction and use of genetic susceptibility tests more and more become a matter of private decisions, reinforcing claims to individual self-determination as a deeply rooted value in the moral landscape of our society.

Introduction

In a highly informative article, published fifteen years ago, Davison et al. addressed predictive genetic testing for susceptibility to common chronic diseases as an important future topic of concern [1]. They noted how at the time many anticipated testing for genetic predispositions to a wide range of cancers, respiratory diseases and cardio-vascular disorders, as well as for other common physical and mental conditions such as diabetes, alcoholism and schizophrenia. The authors emphasized the need for a timely exploration of the social and ethical implications of this growing knowledge of genetic susceptibilities, because in a rapidly changing scientific field “technical knowledge may outstrip the development of the ethical, cultural and political infrastructure required to control it” (p. 341). Such an exploration, however, would not have to start from scratch. Past and current experiences in population screening for breast cancer and raised cholesterol levels already illustrated the potential impact of predictive susceptibility testing. Predictive genetic screening therefore would arrive in a “professional arena containing many pre-existing conceptual structures and debates” (p. 352).

Today, genetic testing has indeed been introduced for predispositions to breast cancer, colon cancer and hypercholesterolemia [2], [3], [4], but for a wide range of other common conditions genetic susceptibility testing has still to come. Yet, living in a time of genomics, the prospects of susceptibility testing are more actively debated than ever and great investments are made in the hope that earlier promises will materialise [5], [6], [7], [8], [9], [10]. In the scientific literature public health genomics has been introduced as the endeavour to substitute the “one size fits all” paradigm in public health with personalized forms of medicine able to predict and prevent disease [11], [12], [13]. This hope, however, clearly remains controversial. Questions are being raised both about the complexity of interactions between genetic and environmental factors in common diseases, and about the social and ethical issues emerging from the translation of knowledge about individual genetic susceptibilities into public health interventions [14], [15], [16], [17], [18], [19], [20], [21], [22], [23].

In this context of hopes and controversies, we take up again the challenge signified by the early contribution of Davison et al. We share their aim that one should prepare for the future by timely thinking through the potential social and ethical implications of genetic susceptibility testing. We also share their idea that previous moral debates constitute an important framework for future technological developments. But our approach is different from theirs in that they depict technology as potentially outstripping established ethical, cultural and political frameworks, suggesting that, faced by technological change, we should hold on to established moral frameworks. By contrast, we aim for a symmetrical and dynamic approach, which allows us to systematically explore the ways in which technological and moral developments may shape future society in a process of interaction. Our basic assumption is that a new technology in society often will create tensions, whereby on the one hand pre-existing practices and notions will shape the ways in which technology becomes embedded in society, and on the other hand, current infrastructures, practices and moral notions are challenged by the new technology. This assumption we have translated in a specific techno-ethical scenario approach, focussing on the tensions and interactions between technological and moral developments [24].¹

In this article we show how this approach may be applied to past and future practices of genetic susceptibility testing. Our starting point is a discussion in Section 2 of recurrent patterns of ethical argumentation in debates about new and emerging science and technology, which may help us to anticipate, in a systematic way, future issues of moral debate [26]. Based on this discussion of the so-called NEST-ethics, we introduce the notion of a moral landscape, referring to those moral beliefs that that have a long history in our society and that as such may be mobilised, or indeed challenged, by actors striving for particular resolutions of moral controversies about new and emerging technologies [27], [28]. In order to explore how new possibilities for genetic susceptibility testing might plausibly interact with established moral beliefs, we present in Section 3 a history of the relevant moral landscape in Dutch society. We show how, in debates about population screening, particular values have emerged as robust elements which will pre-structure future debates about genetic susceptibility testing. Based on this history, we finally present in Section 4 a future techno-ethical scenario, showing how the interaction between moral and technological developments might take shape in the context of emerging practices of genetic susceptibility testing. Our aim is not to offer an abstract judgement in terms of the most ‘rational’ solution of particular controversies, but to suggest a direction that might be considered plausible in the light of past and present, moral and technological developments. In our conclusion we discuss the relevance of our techno-ethical scenario approach for debates about future social and ethical implications of genetic susceptibility testing as a new and emerging technology.