Genetics Tests : How to Improve Management Within Two Medical Specialities (ORGAGENE)

Rennes University Hospital

Status

Completed

Conditions

Diagnostic Techniques and Procedures

Genetics

Treatments

Other: Interviews

Other: Focus Group

Study type

Observational

Funder types

Other

Identifiers

NCT03572322

35RC17_8819_ORGAGENE

Details and patient eligibility

About

This survey will assess discrepancies between official clinical genetics guidelines and practices within 3 West regions of France.

Full description

Genetic tests are now widely used in medicine whatever specialities or ages. However genetic tests are not common biological exams as they may either reveal genetic anomalies before any signs (presymptomatic diagnosis) or handle the gene pool of an entire family but not only one patient. Due to these specific managements, genetics tests have required specific laws for nearly 20 years in France.

The French 2011 Bioethics Law (and its decree in 2013) especially issues involving genetic tests now establishes purposes for which genetic data can be disclosed and switch for patient civil responsibility towards his family. This patient has no longer choice and the medical confidentiality might now be breached.

Although specific guidelines practices have been spread by officials, the gap between recommendations and uses tend probably to be huge especially from non-geneticist physicians.

This survey will assess discrepancies between official clinical genetics guidelines and practices within 3 West regions of France.

20 focus groups are intended to be lead with neurologists and oncologists working in hospitals as theses physicians face different genetic issues daily.

20 interviews are scheduled with patients. The investigators aim at collecting information from medical, legal and sociological points of view in order to better understand these gaps.

This will be the first attempt to gather and understand medical practices in the genetic tests area. This could be useful to adapt courses in medical school and along professional life and how to spread them for a deep impact.

Enrollment

36 patients

Sex

All

Ages

18+ years old

Volunteers

No Healthy Volunteers

Inclusion criteria

Specialists in Oncology, Endocrinology, Neurology and Medical Genetics
Doctors who have already received and returned genetics tests results
Main hospital exercise (CHU, CH, CRLCC) on the territory of the HUGO interregion regrouping the administrative regions Bretagne, Pays-de-Loire and Centre
Adults who having benefited genetics tests
Ability to express oneself easily in French and whose clinical situation allows it

Exclusion criteria