Charles Dupras

Epigenetics and the Environment in Bioethics

A rich literature in public health has demonstrated that health is strongly influenced by a host of environmental factors that can vary according to social, economic, geographic, cultural or physical contexts. Bioethicists should, we argue, recognize this and--where appropriate--work to integrate environmental concerns into their field of study and their ethical deliberations. In this article, we present an argument grounded in scientific research at the molecular level that will be familiar to--and so hopefully more persuasive for--the biomedically-inclined in the bioethics community. Specifically, we argue that the relatively new field of molecular epigenetics provides novel information that should serve as additional justification for expanding the scope of bioethics to include environmental and public health concerns. We begin by presenting two distinct visions of bioethics: the individualistic and rights-oriented and the communitarian and responsibility-oriented. We follow with a description of biochemical characteristics distinguishing epigenetics from genetics, in order to emphasize the very close relationship that exists between the environment and gene expression. This then leads to a discussion of the importance of the environment in determining individual and population health, which, we argue, should shift bioethics towards a Potterian view that promotes a communitarian-based sense of responsibility for the environment, in order to fully account for justice considerations and improve public health.

The ambiguous nature of epigenetic responsibility

Over the past decade, epigenetic studies have been providing further evidence of the molecular interplay between gene expression and its health outcomes on one hand, and the physical and social environments in which individuals are conceived, born and live on the other. As knowledge of epigenetic programming expands, a growing body of literature in social sciences and humanities is exploring the implications of this new field of study for contemporary societies. Epigenetics has been mobilised to support political claims, for instance, with regard to collective obligations to address socio-environmental determinants of health. The idea of a moral ‘epigenetic responsibility’ has been proposed, meaning that individuals and/or governments should be accountable for the epigenetic programming of children and/or citizens. However, these discussions have largely overlooked important biological nuances and ambiguities inherent in the field of epigenetics. In this paper, we argue that the identification and assignment of moral epigenetic responsibilities should reflect the rich diversity and complexity of epigenetic mechanisms, and not rely solely on a gross comparison between epigenetics and genetics. More specifically, we explore how further investigation of the ambiguous notions of epigenetic normality and epigenetic plasticity should play a role in shaping this emerging debate.

The Expert and the Lay Public: Reflections on Influenza A (H1N1) and the Risk Society

Trust between the lay public and scientific experts is a key element to ensuring the efficient implementation of emergency public health measures. In modern risk societies, the management and elimination of risk have become preeminent drivers of public policy. In this context, the protection of public trust is a complex task. Those actors involved in public health decision-making and implementation (e.g., mass vaccination for influenza A virus) are confronted with growing pressures and responsibility to act. However, they also need to accept the limits of their own expertise and recognize the ability of lay publics to understand and be responsible for public health. Such a shared responsibility for risk management, if grounded in participative public debates, can arguably strengthen public trust in public health authorities and interventions.

Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards

ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb20 Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards Katie M. Saulnier & Charles Dupras To cite this article: Katie M. Saulnier & Charles Dupras (2017) Race in the Postgenomic Era: Social Epigenetics Calling for Interdisciplinary Ethical Safeguards, The American Journal of Bioethics, 17:9, 58-60, DOI: 10.1080/15265161.2017.1353182 To link to this article: http://dx.doi.org/10.1080/15265161.2017.1353182

Biopolitical Barriers to a Potterian Bioethics: The (Potentially) Missed Opportunity of Epigenetics

ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb20 Biopolitical Barriers to a Potterian Bioethics: The (Potentially) Missed Opportunity of Epigenetics Charles Dupras, Bryn Williams-Jones & Vardit Ravitsky To cite this article: Charles Dupras, Bryn Williams-Jones & Vardit Ravitsky (2017) Biopolitical Barriers to a Potterian Bioethics: The (Potentially) Missed Opportunity of Epigenetics, The American Journal of Bioethics, 17:9, 15-17, DOI: 10.1080/15265161.2017.1353173 To link to this article: http://dx.doi.org/10.1080/15265161.2017.1353173

Influence of Demographic Characteristics of Participants on Consent to Genomic Research into Congenital Heart Disease

Background: The enrollment of sick children and their families in genomics studies calls for a comprehensive view of the consent process. Few studies have searched for correlations between the demographic characteristics of participants (age, gender, parental lineage) or their level of participation (affected children, parents, or other relatives), on the one hand, and patterns of consent to specific pediatric research procedures, on the other (DNA banking, use of cardiac tissue, disclosure of a cardiac condition, creation of cell lines, recall of a participant).

Epigenetic discrimination: emerging applications of epigenetics pointing to the limitations of policies against genetic discrimination

Over more than two decades, various policies have been adopted worldwide to restrict the use of individual genetic information for non-medical reasons by third parties and prevent ‘genetic discrimination’. In this paper, we bring attention to the growing interest for individual epigenetic information by insurers and forensic scientists. We question whether such interest could lead to ‘epigenetic discrimination’ – the differential adverse treatment or abusive profiling of individuals or groups based on their actual or presumed epigenetic characteristics – and argue that we might already be facing the limitations of recently adopted normative approaches against genetic discrimination. First, we highlight some similarities and differences between genetic and epigenetic modifications, and stress potential challenges to regulating epigenetic discrimination. Second, we argue that most existing normative approaches against genetic discrimination fall short in providing oversight into the field of epigenetics. We conclude with a call for discussion on the issue, and the development of comprehensive and forward-looking preventive strategies against epigenetic discrimination.

Dupras and Williams-Jones Respond

In his letter, Card argues that “it is not the word ‘pandemic’ that needs improvement, but rather our plans and our communication about what the word means—and doesn’t.” We totally agree with and support this statement. We did not aim to critique the formal definition of the word “pandemic.” Instead, we argued that improving communication should not only mean spreading the true definition of technical medical words, but also the recognition that definitions of risk and assessment of what risks are acceptable vary greatly across peoples and contexts. Thus, we argued for a bidirectional transparency—that is, paying greater attention to public perception—to improve risk communication between the experts and the lay public. Building on Doshi’s article,1 Card suggests that the word “pandemic” has never been (formally) associated with levels of severity, and thus “a pandemic is simply an epidemic writ large.” Although this may be (formally) correct, it is also only half true because it does not account for the kind of risk perception engendered by the World Health Organization (WHO) 2009 declaration of a Phase 6 pandemic, which was aimed at both the lay public and the medical community. To say that “pandemicity and severity are separate constructs” ignores the clear variability in risk perception. It also promotes a utopian view of formal definitions that unreasonably minimizes the impact that changing the description of the characteristics of a pandemic (by the WHO on their official Web site in Spring 2009)2 might have had on the development of the influenza A (H1N1) crisis. Severity was implicit in the use of the word “pandemic” by public health authorities. Ignoring this reality—combined with risk amplification by the media—resulted in a worldwide panic that might have been prevented with a more cautious communication of the facts of the case, including open discussions of the scientific uncertainty associated with H1N1 incidence and severity. Now, if “a pandemic is simply an epidemic writ large,” why does the WHO still include in its description of the characteristics of an influenza pandemic the criteria “against which the human population has no immunity”?1 Is this not in fact an aspect of severity?