242673 Translating Cardiogenetic Knowledge to Clinical Practice in the Case of Unexpected Deaths: What are the Ethical, Legal and Social Implications in the Context of Public Health?

Monday, October 31, 2011: 8:30 AM

Nicole DeGroat, BA , Obstetrics/Gynecology, Montefiore Medical Center, Bronx, NY
Kathleen Erskine, MS , Obstetrics/Gynecology, Montefiore Medical Center, Bronx, NY
Lilian Cohen, MD, MPH , Medical Genetics Fellow, Montefiore Medical Center, Bronx, NY
Siobhan M. Dolan, MD, MPH , Obstetrics/Gynecology, Montefiore Medical Center, Bronx, NY
Recent advances in the use of molecular genetic screening and epidemiology have expanded the field of public health genomics, both in disease risk assessment as well as prevention programs for individuals and populations. Genetics has strong ethical, legal, and social (ELSI) implications, as evidenced in the area of cardiogenetics. Molecular genetic technology is currently used in forensic investigations to detect mutations in cardiac ion channels causing long QT syndrome, which can explain a previously sudden unexplained death in an adult (SUDS) or infant (SIDS). Results from this genetic testing have ethical, legal and social implications for the clinical care of surviving family members who may benefit from lifesaving personalized medical and lifestyle recommendations. The Montefiore-Einstein Center for Cardiogenetics (MECC) in the Bronx, NY, is spearheading this effort, utilizing an interdisciplinary team including pediatric and adult cardiologists, medical geneticists, a genetic counselor, psychologists and an ethicist to deliver quality interdisciplinary clinical care. Using interviews and focus groups with families, patients' attitudes towards personalized genomic medicine are revealed. The preliminary results from our qualitative research cover the following themes: comprehension and meaning of disease and genetic testing, timing of disclosure, disclosure of genetic information within families, communication during a time of bereavement, and health implications for surviving family members. The results from this interdisciplinary model provide a framework for using clinical, genetic, and family history to personalize preventive health strategies and hopefully will improve public health research, policy, and programs.

Learning Areas:
Other professions or practice related to public health

Learning Objectives:
Identify a framework for using clinical, genetic, and family history to personalize preventive health strategies in the area of cardiogenetics to improve public health research, policy, and programs.

Keywords: Genetics, Ethics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present because I have been an integral part of this interdisciplinary team working on this research project.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.