about
DECIDE Project
Disclosing risk information: from genetic counselling to the family
We invite you to browse this website to learn more about the DECIDE project. This research is funded for three years (2023-2026) by the Portuguese Foundation for Science and Technology (FCT) and is hosted at the i3S. It comprises a team of 9 interdisciplinary researchers, including clinical and health psychologists, family therapists, a genetic counsellour, clinical geneticists, and a patient advocate.
Objectives
Family communication about genetic risk
DECIDE aims to facilitate the communication of genetic risk information between patients and their family members by leveraging expertise in family, clinical and health psychology and genetic counselling.
The confirmation of a genetic condition in an individual can have implications for biological relatives and other family members, who may be at risk of either developing the condition themselves or passing it on to their offspring. However, many patients report difficulties in informing family members of their genetic risk. It is estimated that many relatives remain unaware of their potential risk for longer than necessary, and, in some cases, they never receive this information.
Objectives
Decisions about family disclosure
This project aims to investigate the path that patients follow in their considerations regarding the disclosure of genetic risk information to their family members, and what influences their decision-making processes.
Healthcare professionals commonly encourage patients to disclose risk information to their family members, especially when there may be a chance that they may have an increased risk of serious harm that could be averted by medical intervention or surveillance. Generally, patients understand the importance of passing on this information to their family members and are willing to do so. However, fulfilling this intention is not always straightforward. Various individual, family, social, and cultural factors influence this communication process, and the discussions between healthcare professionals and patients during genetic counselling are equally important.
Genetic counselling framework
The ultimate goal of DECIDE is to develop a framework to facilitate decisions regarding family communication within genetic counselling, through a co-design approach involving patients, family members, patient representatives, healthcare professionals, and researchers. This framework will be designed to serve as a resource to help healthcare professionals facilitate patients’ deliberations and decisions about communicating with their families.