This axis will bring together researchers who intend to participate in a multidisciplinary approach to the child's body apprehended in a continuum (before and after birth) through situations of particular vulnerability (premature birth, discovery of a handicap at birth, screening for a rare disease, etc.).).
Researchers work on the basis of a unanimous observation: the anthropological and ethical questions associated with the monitoring of pregnancies and the first years of life have diversified due to the sophistication of screening and diagnostic tools, both prenatal and postnatal. However, public policies on perinatal screening bring into play moral values, deontological rules and legal norms that need to be clarified by means of shared expertise in medical ethics and health law. They also involve the contribution of SHS researchers who strive to shed light on motivations, cultural representations and parental imaginations. The researchers of this axis plan to focus on sickle cell screening, which will be generalized throughout the country in November 2022 by the Haute Autorité de Santé. The systematization of this screening for the most frequent genetic disease will give rise to AAPs that will solicit the skills of actors interested in the deployment of newborn screening and surveillance systems, including lawyers interested in public health issues.
Composed of researchers at the crossroads of medical sciences and humanities, the project
" body, ethics and beginning of life " will be coordinated by Pr. Barthélémy Tosello, project leader who is currently conducting innovative research on a national scale with the help of a 392,000 € grant (AAP DGOS) on the intervention of " resource parents " during the hospitalization of the newborn with a view to improving the parental experience The members who will work on this project are associated with researchers in psychology belonging to other units housed within the ISSPAM, in order to develop psycho-social approaches to communication in neonatal resuscitation (AAP Fondation de France " Soigner Soulager " obtained in 2021 of 120 000 €).