This program is developed in partnership with the Paris Descartes University and the Marcel Mauss Institut – CENJ (Centre for the study of judicial norms), EHESS/CNRS/UMR 8178.
The significant growth of new technologies and their impact on practices raises important ethical questions for patients as well as for researchers and clinicians.
The SiRIC-Curie human and social sciences program aims at studying and shedding new light on these questions to encourage the advancement of practices taking into account the expectations and needs of the patients.
The integrated projects of human and social sciences
1) Cancer Genetics
Project coordinated by Dr Simone Bateman (CNRS / UPD) and Prof Dominique Stoppa Lyonnet (UPD / IC)
- Hereditary cancers and reproduction : role that family history and family preferences play in the decision to resort to Prenatal Diagnosis (PND) and Preimplantation Genetic Diagnosis (PGD)
- Impact of next generation sequencing in cancer genetics : impact of whole genome sequencing : from gene targeted tests to personalised genomic medicine
2) Early clinical trials
Project coordinated by Dr Hélène Chappuy (APHP) and Prof François Doz (IC)
- Improving equality of access to early phase clinical trials in cancer : the objective of this project is to formulate the guarantees to be proposed to patients by recruitment, information and consent procedures (at local or global level) in order to improve equality of access to early trials in cancer
- Information and consent for early clinical trials in adolescents and young adults : this study evaluates how adolescents and young adults perceive and understand the information that they are given when their consent is sought for participation in an early clinical trial
3) Quality of life and quality of care
Project coordinated by Dr Edwige Rude-Antoine (CNRS / Institut Marcel Mauss) and Dr Anne Brédart (UPD)
- Perception of needs and emotions by metastatic cancer patients and their oncologists : concordance, predictors of concordance and impact on patients’ quality of life and satisfaction with care.
- Announcing the diagnosis and treatment of a life-threatening disease to an adolescent patient and his/her family : the examples of haematology and oncology services
Pluridisciplinary reflection on genomic analysis using next generation sequencing
Organisation of a series of workshops : "From Gene-Targeted Tests to Genome-Wide Data in Cancer Genetics: A Paradigm for the Development Personalised Genomic Medicine?":
Quality and accuracy of genetic data and knowledge produced by genome-wide strategies
Personalised Genomic Medicine and Therapeutic Innovation
Genomic Data: Challenges to the Concept and Practice of Genetic Counselling
EgaliCan: a symposium focused on equality of acess to early clinical trials
This symposium was based on the "EgaliCan" program integrated in the « early clinical trials » SiRIC-Curie project and conceived in collaboration with Institut Gustave Roussy.
Centers that were involved: Institut Gustave Roussy, Institut Curie, The Research Center for Maining, Ethics, Society (UMR CERSES 8137 CNRS, EHESS), Collège de France, the Sorbonne’s methods of sociologist methods study group (UMR 8598 GEMASS, CNRS, Paris Descartes).
Reflection on announcing the disease
A series of seminars : « From explanation to understanding : announcing a life threatening disease » 2014- 2015