Precision Medicine Conference. Ethical and Legal Issues

Friday 24 Mar 2023, 09:00 - 17:00
Spoken Language

Sale Noble / ENSP/ Lisboa

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In recent years, the clinical applications of precision medicine, also known as personalised medicine, have expanded. With the rise of such applications, precision medicine's ethical, legal and social implications have increased in scope and complexity. This trend is likely to continue in the coming years, with wider adoption throughout the healthcare system creating a need to broaden the focus of work in this area. Some foundational issues considered were access, safety and efficacy, informed consent, and reimbursement. With the increased use of (genetic) datasets, new aspects include privacy, discrimination, the physician-patient relationship, concerns about costs, and liability.

The conference's goal is to unpack the onion of issues that relate to precision medicine from different perspectives (medicine, ethics, law and other sciences). This 1-day conference will start with a keynote lecture, followed by several sessions.

Keynote lecture:

Prof. dr. Len Fleck - Center for Bioethics and Social Justice, Department of Philosophy, Michigan State University (USA).

Leonard Fleck's interests focus on medical ethics, health care policy, priority-setting and rationing, and reproductive decision-making. He explores the role of community dialogue (rational democratic deliberation) in addressing controversial issues of ethics and public policy related to emerging genetic technologies. More recently, he has completed a book- length manuscript that addresses several ethical and policy issues related to precision medicine, primarily in a cancer treatment context. He also finished another book that addresses several contemporary issues related to bioethics and religion from a Rawlsian public reason perspective.

Keynoter presentation

Metastatic cancer and costly precision medicines generate highly complex problems of health care justice. Targeted cancer therapies yield only very marginal gains in life expectancy for most patients at a very high cost, thereby threatening the just allocation of limited healthcare resources. Philosophers have high hopes for the utility of their theories of justice in addressing resource allocation challenges; however, none of these theories adequately address the “wicked” ethical problems that have resulted from these targeted therapies. What we need instead, bioethicist Leonard M. Fleck argues, is a political conception of health care justice, following Rawls, and a fair and inclusive process of rational democratic deliberation governed by public reason. His account assumes that we have only limited healthcare resources to meet unlimited healthcare needs generated by emerging medical technologies. The primary ethical and political virtue of rational democratic deliberation is allowing citizens to fashion autonomously shared understandings of how to fairly address the complex problems of healthcare justice generated by precision medicine. While ideally, just outcomes are a moral and political impossibility, “wicked” problems can metastasize if rationing decisions are made invisibly—in ways effectively hidden from those affected by those decisions. As Fleck demonstrates, a fair and inclusive process of democratic deliberation could make these “wicked” problems visible, and subject, to public reason.


This conference provides the opportunity to participate in one of the state-of-the-art research programmes that the ENSP offers. The ENSP tackles existing and emerging health concerns by bringing together the many academic disciplines needed to address them. Participants will be exposed to the latest thinking in precision medicine and will present and discuss their research outcomes related to the conference theme.

Call for Abstracts

The conference has a multidisciplinary approach inviting academics, professionals, (PhD) students and other interested persons to participate and submit an abstract for a presentation addressing the conference topic (deadline: 1 February 2023).

More information

For more information, contact Andre den Exter or Paula Lobato de Faria (

Hybrid conference. The ENSP2023 will be a hybrid conference that will run fully in-person and fully virtually..

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