BIOETHICS - BIOethics Exploring Trajectories
of Health Innovations Challenging Society
CERPOP, UMR 1295, Joint Research Unit: Inserm - University Toulouse III Paul Sabatier

 

Emmanuelle RIAL-SEBBAG - Leader @ 05 61 14 56 16   
 
The BIOETHICS team occupies a transversal position within the CERPOP unit. The team identifies and analyzes the trajectories of health innovations, the emergence of which leads to a redefinition of pre-existing frameworks and implies societal appropriation. Addressing these issues requires an interdisciplinary and internormative approach, based on theoretical and empirical analyses, which is the only approach that allows for a global assessment of governance. We work on analyzing institutions and the norms they produce (top down) as well as on the construction of social norms (bottom up) around 3 axes 1/The governance of the body, health care and research: the rights of individuals, ethical and public health issues, 2/The uses of digital technology and scientific data, 3/The trajectories of actors in health: evolutions and reconfigurations. Our original approach involves considering bioethics as an integral part of public health. From a methodological point of view, we do not limit our studies to the impacts of innovations (a posteriori), but we try to anticipate the consequences that they could produce (a priori) by integrating ethical, legal, moral and social issues from the conception of innovations onwards. Our analyses are carried out specifically in the fields of genetics and oncology.

Our team coordinates the Ethics and Biosciences Platform of the GIS Génotoul and works in close interaction with the UNESCO Chair in Ethics, Science and Society.
expected Health effects


• Our work leads to outcomes such as the production of scenarios for the use of innovations in health care within a stabilized legal and ethical framework, an aid to validation and decision-making regarding clinical applications of innovations and the implications of innovative therapies for the health care system based on a multidisciplinary analysis.

• We develop tools and recommendations to facilitate data sharing, biological sample transfers and biotechnology governance. We produce methodologies to conduct ethical and legal frameworks that operate at a global scale.

 

SCIENTIFIC OBJECTIVE


• The bioethical dimension intersects with all our research axes:

1/ The governance of the body, its elements and its products: rights of individuals, ethical and public health issues (Taboulet F., Rial-Sebbag E., Cambon-Thomsen A., Chassang G. Duguet AM, Mabile L., Couderc B., Juillard-Condat B). This axis analyses the ethical, legal and social implications of medical/societal and research uses of the human body and the possible transformations or incorporations of these elements into health products (advanced therapy drugs). Specifically, we explore major bioethical issues related to the uses of the body and new disciplines of medicine.

2/ The uses of digital technology and scientific data (Béranger J., Rial-Sebbag E., Cambon-Thomsen A., Chassang G., Duguet AM, Mabile L.). Health data and more generally scientific data are nowadays produced in an unprecedented volume thanks to the development of digital tools. We intend to contribute to the implementation of an ethical data policy, whether the data are protected or open to the scientific community, by making the hypothesis that these ethical and legal issues of their use should be thought through upstream of the design of storage and processing tools (the so-called "by design" approach) and integrated into operating methods.

3/ The trajectories of actors in health care: evolutions and reconfigurations (Couderc B., Rial-Sebbag E., Julia S., Béranger J., Cambon-Thomsen A., Chassang G., Duguet AM, Taboulet F., Juillard-Condat B., Faya Robles B., Delpla PA). Public and private actors in the health sector are responsible for producing normative grey zones that underlie the use of innovations. These norms are the result of a social arbitration between the developers of new technologies and methods, and the users or end users. Our team is interested in the reconfiguration of these social spheres around innovation and how this contributes to the development of public policies at both the national and global levels.

On going projects


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PUBLICATIONS


2024  •  8 publications
2023  •  33 publications
2022  •  39 publications
2021   •  47 publications
2020  •  47 publications
2019  •  26 publications