Genetic Research and DNA Banking
Genetic research aims to characterize and identify genetic factors in diseases and adaptive phenotypes or neutral polymorphisms in families or sub-populations demonstrating genetic, clinical, and demographic characteristics pertinent to study. Genetic diseases can be hereditary (mendelian), genetic (sporadic, somatic) or multifactorial (predisposition, susceptibility).
At the MUHC, genomic research is conducted according to procedures for obtaining and using this material and information consistent with classical ethical principles, notably: the respect for human dignity, beneficence/non-maleficence and justice. For the purposes of research oversight, “genetic material” refers to all elements of the human body which can directly or indirectly provide DNA, that is tissue, organs, cells or other substances. Genetic information obtained in the course of a study is stored under one of the following categories:
- nominative
- coded,
- anonymized (the individual cannot be traced but contains descriptors such as demographic and clinical data)
- anonymous (no descriptors at all)
With the rapid development of technological and genomic knowledge, specific measures of protection, are required for research subjects, (individuals, families or populations), as well as for society as a whole. McGill University and the MUHC adopted the model consent document developed by the Réseau de Médecine Génétique Appliquée (RMGA) or the Network of Applied Genetic Medicine.
For more discussion on research with human genetic material please refer to the Réseau de Médecine Génétique Appliquée website.
* adapted from the RMGA website