Team 12-Ethical aspects

Attachment structures :

Hospinnomics AP-HP/PSE, Espace éthique région Ile-de-France, Hôpital Trousseau AP-HP

Adress :

Chaire Hospinnomics, Hôpital Hôtel-Dieu, bât. B1-5, 1 place du Parvis Notre-Dame, 75004 PARIS

CONECT-AML  project leader in this team :

  • Jean-Claude DUPONT, Hospinnomics et équipe de recherche ETREs (Paris 5)
  • Dominique DAVOUS, chercheur, Espace éthique région Ile-de- France, Université Paris Sud
  • Hélène CHAPPUY, PU-PH, Sorbonne Université, Hôpital Trousseau AP-HP

Other project participants in the team :

  • Amélie DE HAUT DE SIGY, ingénieur d’étude, psychologue, Unité de recherche clinique, Hôpital Necker enfants malades

Project summary :

The complexity of genetics, the parents’ desire to know if their child’s cancer may have a genetic origin, the common assimilation of genetics to inheritance, raise questions that involve identity and concern an entire family. Providing genetic information consultation, directing to genetic examinations, giving results are delicate tasks performed by clinicians for whom genetics, as a whole, often remains difficult to understand or difficult to approach with parents, child and his family.

An ethical questioning, around the information book intended for parents “My child has cancer – Is it genetic?” should allow offering pediatricians benchmarks to help communicate information to families.

Documentation

Three documents dating from 2015, date of creation of the book, developed by the group “Parents and Caregivers facing ethics in pediatrics” created in 1997 within the Ethics Space Île-de-France region:

–      The text of the booklet itself “My child has cancer – Is it genetic?”

–      The presentation made by Franck Bourdeaut (oncologist at the Institut Curie and co-coordinator of the group since 2010) in the editorial of the Pediatric Oncology and Hematology Review – ROHP n ° 3, 2015

–       The article written by Franck Bourdeaut and Paul-Loup Weil-Dubuc (philosopher, member of the group) in the same issue of this review: “Right to know, right to ignorance”

An article written on behalf of the group “Parents and Caregivers facing ethics in pediatrics” published in the French Journal of Applied Ethics -RFEA n ° 6, 2018, signed by Dominique Davous, co-founder introduces the group in the first part and second part, a reflection on the care relationship: the knowledge and interactions involved in this relationship, as well as a modeling of the caregiver-patient relationship adapted from the model of Albert Hirschman, economist and sociologist American. To consult the article “The group”? Parents and caregivers facing ethics in pediatrics? “Is it a transposable model for thinking about ethical reflection? “