caa a22 4500 605544670 CHVBK 20210128100932.0 cr unu---uuuuu 210128e20150801xx s 000 0 eng 10.1007/s10897-014-9783-7 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9783-7 Disclosing Genetic Information to Family Members About Inherited Cardiac Arrhythmias: An Obligation or a Choice? [Elektronische Daten] [Rick Vavolizza, Isha Kalia, Kathleen Aaron, Louise Silverstein, Dorit Barlevy, David Wasserman, Christine Walsh, Robert Marion, Siobhan Dolan] Inherited cardiac arrhythmias such as long QT syndrome and Brugada syndrome, present clinical as well as ethical, legal, and social challenges. Many individuals who carry a deleterious mutation are largely asymptomatic and therefore may not be diagnosed until after the occurrence of a personal or family member's cardiac event. The familial nature of inherited genetic information raises numerous ethical, legal, and social issues regarding the sharing of genetic information, particularly when an individual found to carry a deleterious mutation refuses to disclose his or her results to at-risk family members who could benefit from life-saving treatments. This qualitative study sought to understand the experiences with genetic testing for individuals (n = 50) with a personal or family history of cardiac events or sudden death. Unstructured in-person focus groups or interviews were conducted for each participant in the study. The recordings of these interviews were transcribed verbatim and subsequently analyzed and coded. Participants' comments regarding sharing of genetic information centered around four main themes: (1) motivation to disclose; (2) extent of disclosure; (3) effect of disclosure on family dynamics; and (4) reasons for not sharing genetic information. The majority of individuals believed that affected individuals are obligated to disclose genetic information to family members. In the era of personalized medicine, the disclosure of genetic information provides individuals the opportunities to learn about the genetics, disease characteristics, and treatment options in order to reduce morbidity and mortality in themselves and their family members. Further research is necessary to identify and explore the barriers to sharing genetic information with at-risk family members. National Society of Genetic Counselors, Inc., 2014 Disclosing genetic information nationallicence Cardiac arrhythmia nationallicence Long QT syndrome nationallicence Ethical, Legal, and social issues nationallicence Genetic counseling nationallicence Family communication nationallicence Vavolizza Rick Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut Kalia Isha Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut Aaron Kathleen Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut Silverstein Louise Ferkauf Graduate School of Psychology of Yeshiva University, Bronx, NY, USA aut Barlevy Dorit Center for Ethics at Yeshiva University, New York, NY, USA aut Wasserman David Center for Ethics at Yeshiva University, New York, NY, USA aut Walsh Christine Department of Cardiology, Children's Hospital at Montefiore, Bronx, NY, USA aut Marion Robert Divisions of Developmental Medicine & Genetics, Department of Pediatrics, Children's Hospital at Montefiore, Bronx, NY, USA aut Dolan Siobhan Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/4(2015-08-01), 608-615 1059-7700 24:4<608 2015 24 10897 https://doi.org/10.1007/s10897-014-9783-7 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9783-7 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Vavolizza Rick Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut NATIONALLICENCE 700 1- Kalia Isha Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut NATIONALLICENCE 700 1- Aaron Kathleen Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut NATIONALLICENCE 700 1- Silverstein Louise Ferkauf Graduate School of Psychology of Yeshiva University, Bronx, NY, USA aut NATIONALLICENCE 700 1- Barlevy Dorit Center for Ethics at Yeshiva University, New York, NY, USA aut NATIONALLICENCE 700 1- Wasserman David Center for Ethics at Yeshiva University, New York, NY, USA aut NATIONALLICENCE 700 1- Walsh Christine Department of Cardiology, Children's Hospital at Montefiore, Bronx, NY, USA aut NATIONALLICENCE 700 1- Marion Robert Divisions of Developmental Medicine & Genetics, Department of Pediatrics, Children's Hospital at Montefiore, Bronx, NY, USA aut NATIONALLICENCE 700 1- Dolan Siobhan Department of Obstetrics and Gynecology and Women's Health, Albert Einstein College of Medicine/ Montefiore Medical Center, 1300 Morris Park Avenue, Block 634, 10461, Bronx, NY, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/4(2015-08-01), 608-615 1059-7700 24:4<608 2015 24 10897