Nadia Z Hidayatallah, PsyD

From January 2010 through August 2011, Dr. Hidayatallah worked with an interdisciplinary team to conduct NIH-funded research on the ethical and psychosocial implications of genetic testing in the context of cardiogenetic conditions. The qualitative research team interviewed 50 participants who had either experienced a cardiac event themselves or had a family member who had experienced or died from a cardiac event. Through semi-structured interviews and coding of data using a grounded-theory approach, the team learned about bereavement in the case of a sudden and unexplained death, attitudes toward genetic testing and sharing genetic information with family members, effects of receiving genetic testing results, interactions with healthcare providers and medical examiners, issues of health literacy, and the importance of including psychologists on interdisciplinary medical teams. The research team hopes that their multiple publications will be used to standardize the difficult processes associated with genetic testing (ie, introducing the possibility of testing, providing test results) and make the experiences less anxiety-provoking for families. Another aim has been to provide accurate and accessible information about cardiac channelopathies for both patient and medical communities.