Marie Gaille at the Institute’s Ethics Meetings – March 19


As part of the Institute of Myology’s Ethics Meetings,
the Think Tank in Applied Ethics presents:

 

THE ETHICAL DILLEMMA OF PREMATURE SCREENING
OF GENETIC DISEASES
DURING THE ASYMPTOMATIC PHASE

 

“Sharing the uncertainty, and beyond? ?”

 

Speaker, Marie Gaille
Doctor of Philosophy
Centre de recherche sens, éthique, société
CNRS Université Paris Descartes

 

Discussant, France Leturcq
Discussant Pharmacy
Service de génétique et biologie moléculaires
Hôpital Cochin

 

 

Tuesday March 19, 2019 – 16h30-18h30
Pitié-Salpêtrière Hospital
Institute of Myology
Babinski Building

 

The premature screening of genetic conditions during their asymptomatic phase is currently a publically discussed issue, a question that is indeed justified giving that it has largely gone beyond the capacities of professional healthcare circles.

In this conference, we wish to present the manner in which the discussion is organized: Who are the stakeholders? What is the main rationale that represents its expansion to such or for such pathologies? What is the broader context in which the discussion is taking place? From this first analysis, we will see that the rise of premature screening can appear like an “inevitable” and unavoidable evolution. In this case, how can the demonstration of ethical resistance be explained?

As a next step, we are endeavoring to identify the reasons behind this resistance and its relative arguments. We will base our analyses on myopathy literature, particularly Duchenne muscular dystrophy; however we also seek to extrapolate in part from our thinking and experiences on the ethical dilemmas that we are most familiar with, or something similar. In this analysis, we will particularly highlight the notion of “uncertainty”: What are the different forms at stake? Which have a role in the discussion of the expansion of genetic disease screening during the asymptomatic phase? What can we say about its ethical implications?

 

 

Organization : France Leturcq, Marcela Garguilo, Nadine Le Forestier, Claire-Cécile Michon, Pascale Richard, Marianne Perreau-Saussine, Pascale Richard, Elena Gargaun-Ursache, Anthony Behin, Nicolas Vignier.

 

Further details on Marie Gaille