The mission of the Ethics and Health axis is to study the socio-ethical and political implications of the policies and practices of public health services and healthcare systems. More specifically, it examines issues related to the Quebec and Canadian healthcare systems, such as resource allocation and social justice, or the ethical evaluation of new healthcare technologies. Thus, the team of this axis intends to promote a coherent analysis and an informed public debate in the field of healthcare, so as to contribute to the development of appropriate public policies and professional guidelines. There are three research themes in this axis.

Axis directors: Ryoa Chung and Nathalie Orr Gaucher

THEME I – Ethical aspects of the transitional context of prenatal screening

Led by: France Légaré and Vardit Ravitsky

Other contributors: Ryoa Chung, Marie-Chantal Fortin, Pascale Fournier, Anne Hudon, Vida Panitch, Natalie Stoljar and Daniel Marc Weinstock

Developments in new technologies have made it possible to offer a non-invasive prenatal test (NIPT), which is safe and performed earlier in pregnancy compared to existing screening tests. NIPT developed rapidly and expanded to include an increasing number of genetic diseases. Such development allows future parents greater control over the identity of the children they choose to bring into the world. It also raises challenges to the ethics of termination; especially for reasons considered trivial (e.g. sex choice, minor disabilities) and social impact in terms of eugenic attitudes and stigmatization of people already suffering from detected diseases. This theme will explore, through several projects, the ethical landscape surrounding these new technologies.

Project 1.1. – Non-invasive prenatal testing (NIPT) and expansion of tested conditions – Questionnaire

Led by: Vardit Ravitsky

Other contributors: Anne Hudon, France Légaré, Vida Panitch and Daniel Marc Weinstock

This project aims to recruit 400 pregnant women and their partners to complete questionnaires about their perceptions, concerns and preferences regarding NIPT implementation and future uses. This information will be used to inform and guide decision-makers on public policies to adopt.

Project 1.2. – Fetal genome sequencing through NIPT – interviews

Led by: Vardit Ravitsky

Other contributors: France Légaré and Daniel Marc Weinstock

This project will use qualitative methodologies including, but not limited to, interviews with various stakeholder groups (advocates for persons with disabilities, persons with disabilities and their parents, policy makers, and healthcare professionals) regarding the future possibility of sequencing the whole fetal genome through NIPT.

Project 1.3. – Deliberative consultation on the future of prenatal testing – focus groups and expert workshops

Led by: Vardit Ravitsky

Other contributors: Ryoa Chung, Marie-Chantal Fortin, Pascale Fournier, Anne Hudon and Natalie Stoljar

This project will bring together groups of experts, stakeholders and representatives of the communities involved in a series of consultative workshops to discuss the ethical issues associated with the future of prenatal testing. The topics covered during the workshops will be chosen based on the issues identified by the questionnaire and interviews (projects 5.1.1 and 5.1.2). This could include, for example, the issue of informed choice to test or not to test, or the implications of testing on discrimination against people with disabilities. Among other things, the goal of this research project is to produce reports and white papers to inform and enlighten public policy development.

THEME II – The ethics of gene editing and the shaping of future societies

Led by: Yann Joly and Maria Bartha Knoppers

Other contributors: Chantal Bouffard, Samia Hurst, Jocelyn Maclure, Barbara Prainsack, Vardit Ravitsky, Anne Saris and Kristin Voigt

New technologies make it possible to modify DNA reliably and inexpensively, including that of humans. Similar to the “copy/paste” functions of word processing, these technologies allow targeted modifications to be introduced into the genome and have an impact on the health and identity of future individuals. Editing human germline genes (sperm, ova and embryos) is believed to be hereditary and carries unknown risks. Although this use is currently banned globally, very heated debates about the ethics and future governance of these technologies have emerged.

Project 2.1. – Germline gene editing and the notion of “severe” conditions in policy-making

Led by: Yann Joly and Bartha Maria Knoppers

Other contributors: Chantal Bouffard, Samia Hurst, Jocelyn Maclure, Barbara Prainsack and Vardit Ravitsky

Although gene editing to modify the germline is currently prohibited, some recent policy proposals suggest implementing this technology in a phased manner, starting with its use to prevent “serious” and incurable diseases. This project will explore the ethical and political landscape underlying the notion of “serious”, this key concept being very poorly defined in the literature. A nuanced analysis of the criteria associated with the concept of ‘severity’ will allow for an ethically justified use of this concept in the health policy surrounding these technologies.

Project 2.2. – Gene editing: promoting public debate in the media in an informed and responsible manner

Led by: Bartha Maria Knoppers and Vardit Ravitsky

Other contributors: Barbara Prainsack, Anne Saris and Kristin Voigt

The aim of this project is to inform and sensitize journalists and communicators in the fields of science and health, as well as to develop innovative ways of using the media to promote public debate. This will include interviews and focus groups to better identify levels of knowledge and gaps, to better understand the needs of those best placed to inform the public. This project will focus on ways to promote not only public understanding of science, but also of the social, ethical, legal and political aspects of gene editing in humans. Based on the data collected, we will then develop resources for those writing about gene-editing technologies.

THEME III – Responsibilities, Public Policy and Health Education

Led by; Bryn Williams-Jones and Daniel Marc Weinstock

Other contributors: Jonas-Sébastien Beaudry, Ryoa Chung, Peter Dietsch, Marie-Chantal Fortin, Iwao Hirose, Anne Hudon, Matthew Hunt, Bertrand Lavoie, Catherine Lu, Bruce Maxell, Vida Panitch, Vardit Ravitsky, Anne Saris, Lisa Xchwartz, Karine St-Denis and Kristin Voigt

The researchers gathered under this theme are interested in the normative and institutional framework of certain practices that raise important equity issues. The aim is to inform the debates surrounding the development of public policies, guidelines and training in the field of health. It will examine the responsibility of the main actors (professionals, organizations and policy makers), the type of regulatory framework to be prioritized on issues that raise a high risk of stigmatization or are highly controversial, as well as how to prepare the next generation among healthcare professionals for the dilemmas they will face in their daily tasks.

Project 3.1. – Accountability to vulnerable populations

Led by: Ryoa Chung

Other contributors: Jonas-Sébastien Beaudry, Marie-Chantal Fortin, Anne Hudon, Matthew Hung, Bertrand Lavoie, Catherine Lu, Anne Saris and Lisa Schwartz

The responsibility of healthcare professionals, private and public health organizations, and governments takes many forms and raises many questions when faced with vulnerable individuals or populations. What responsibility should be given to front-line healthcare workers for injured workers they care for who must return to work with injuries? What are the obligations of humanitarian organizations to the populations they leave once the conflict is deemed to be resolved? How to supervise the search for living organ donors, here and those who are solicited abroad?

Project 3.2. – Public policies on health issues

Led by: Daniel Marc Weinstock

Other contributors: Jonas-Sébastien Beaudry, Ryoa Chung, Iwao Hirose, Matthew Hunt, Bertrand Lavoie, Vida Panitch, Vardit Ravitsky, Kristin Voigt and Bryn Williams-Jones

When it comes to healthcare and population health, there are important issues of justice, equality and equity. The researchers affiliated with this project are interested in the different effects of these inequalities (in terms of actual risks or impairments to well-being) on individuals and groups, as well as their social determinants. Their objective is to guide public policies to meet the challenges posed by issues surrounding electronic cigarettes, cannabis, obesity, and medical assistance in dying.

Project 3.3. – Innovative approaches and resources for bioethics education and dissemination

Led by: Bryn Williams-Jones

Other contributors: Peter Dietsch, Anne Hudon, Matthew Hunt, Bruce Maxwell, Lisa Schwartz and Karine St-Denis

Many healthcare professions still do not have an ethics education program that prepares stakeholders (ethics committees and practitioners) for the many ethical challenges they will face. To fill this gap, the researchers associated with this project are working to set up an online bioethics program, accessible to students wishing to pursue university studies leading to a university degree or to healthcare professionals seeking targeted training, leading to a certificate. In addition, they are developing increasingly sophisticated tools to engage the public in discussions about biomedical dilemmas that affect all citizens, such as end-of-life or prioritization of healthcare and services.