{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,18]],"date-time":"2026-09-18T09:40:59Z","timestamp":1789724459143,"version":"4.0.1"},"reference-count":33,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2014,3,25]],"date-time":"2014-03-25T00:00:00Z","timestamp":1395705600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2014,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Genetic testing is becoming increasingly available for cardiac channelopathies, such as long QT syndrome and Brugada syndrome, which can lead to sudden cardiac death. Test results can be used to shape an individual's medical management and to identify at\u2010risk family members. In our qualitative study, all participants had a personal or family history of a diagnosed cardiac arrhythmia syndrome or sudden cardiac death. Open\u2010ended interviews were conducted individually and in focus groups. Interviews were audio recorded, transcribed verbatim, and analyzed using a qualitative grounded\u2010theory approach. Of 50 participants, 37 described their motivations for pursuing genetic testing for long QT syndrome or another cardiac channelopathy. Participants\u2019 motivations included: to find an explanation for a family member's sudden death, to relieve uncertainty regarding a diagnosis, to guide future medical management, to allay concern about children or other family members, and to comply with recommendations of physicians or family members. Perceived reasons not to pursue genetic testing included denial, fear, and lack of information. The genetic counseling and informed consent process can be enhanced by understanding and addressing an individual's internal and external motivations either for or against pursuing genetic testing.<\/jats:p>","DOI":"10.1007\/s10897-014-9707-6","type":"journal-article","created":{"date-parts":[[2014,3,24]],"date-time":"2014-03-24T07:01:39Z","timestamp":1395644499000},"page":"849-859","source":"Crossref","is-referenced-by-count":22,"title":["Motivation to Pursue Genetic Testing in Individuals with a Personal or Family History of Cardiac Events or Sudden Cardiac Death"],"prefix":"10.1002","volume":"23","author":[{"given":"Kathleen E.","family":"Erskine","sequence":"first","affiliation":[{"name":"Department of Obstetrics &amp; Gynecology and Women's Health, Division of Reproductive Genetics Albert Einstein College of Medicine\/ Montefiore Medical Center 1300 Morris Park Avenue, Mazer 634 Bronx NY 10461 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nadia Z.","family":"Hidayatallah","sequence":"additional","affiliation":[{"name":"Department of Psychiatry Mt. Sinai St. Luke's New York NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine A.","family":"Walsh","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Cardiology Children's Hospital at Montefiore Bronx NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas V.","family":"McDonald","sequence":"additional","affiliation":[{"name":"Departments of Medicine and Molecular Pharmacology Albert Einstein College of Medicine Bronx NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lilian","family":"Cohen","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Medical Genetics Weill Cornell Medical College New York NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert W.","family":"Marion","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Divisions of Developmental Medicine &amp; Genetics Children's Hospital at Montefiore Bronx NY USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Siobhan M.","family":"Dolan","sequence":"additional","affiliation":[{"name":"Department of Obstetrics &amp; Gynecology and Women's Health, Division of Reproductive Genetics Albert Einstein College of Medicine\/ Montefiore Medical Center 1300 Morris Park Avenue, Mazer 634 Bronx NY 10461 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2014,3,25]]},"reference":[{"key":"e_1_2_7_2_1","unstructured":"American Medical Association.Informed consent.http:\/\/www.ama\u2010assn.org\/ama\/pub\/physician\u2010resources\/medical\u2010ethics\/code\u2010medical\u2010ethics\/opinion808.page. 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