From expertise to lived experiences of genetic diseases. On patients’ organisations’ involvement in the construction of scientific and medical evidence. Research perspectives

Genomic medicine is currently an expanding field. Based on the complete sequencing of the human genome, recent innovations promote the development of new protocols of diagnostic and treatments against hereditary genetic diseases. Thereby, they create opportunities which can disrupt the relationships between involved actors, such as patients and their relatives, concerned organisations, medical experts, as well as genomics specialists and health policy managers. This presentation exposes the baseline questions of a research project interested in some Belgian patients’ organisations’ involvement in issues related to genetic diseases within this current context, especially in the construction of the so-called scientific and medical evidence". It addresses its expansion to patients' experiential knowledge which is based on their lived experiences of health and disease."