Research
Project RESEARCH
Disclosing risk information: from genetic counselling to the family
The DECIDE project aims to investigate the processes through which genetic counselling patients make decisions regarding the communication of risk information to their family members. Specifically, this research project aims to elucidate the influence of genetic counselling on patients’ considerations about sharing that information to their families, while also seeking to comprehend the role played by the family and other lifeworld factors in the patient’s decision-making process. The findings from these investigations will form the base to the development of a framework for genetic counselling, which will serve as a tool to assist healthcare providers in facilitating patient decision-making concerning the disclosure of genetic risk information to their families.
Using a longitudinal multi-method approach, our intention is to examine the patient’s journey throughout the decision-making process. We will observe genetic counselling sessions, invite patients to keep diaries to document their thoughts, and subsequently conduct interviews to delve into their more settled decisions and what has influenced their considerations and decisions. This comprehensive approach will establish an empirical basis for understanding the process of patient decision-making, upon which a multi-stakeholder panel will collaborate to co-create a consensus-based counselling framework.
The project will center on two distinct areas, each carrying different implications for patients and their relatives: untreatable inherited conditions (such as neurodegenerative diseases) and conditions where prevention, surveillance, and treatment options are increasingly accessible, (such as inherited cancer and cardiac predisposition syndromes). This research will be conducted within medical genetics services across Portugal.