title: Genetic Insurance Discrimination in Sudden Arrhythmia Death Syndromes: Empirical Evidence From a Cross-Sectional Survey in North America.
abstract: BACKGROUND
  There is virtually no information assessing the insurability of families affected with Sudden Arrhythmia Death Syndromes (SADS) for the determination of the nonclinical implications of genetic screening. It is important to identify the barriers and challenges faced by families as a result of genetic screening for SADS to enable equitable access to insurance coverage.
  
  
  RESULTS
  To explore the insurance coverage experiences of SADS-affected families, we administered a cross-sectional online survey across North America from April 28, 2012 to November 13, 2013. Participants included individuals with a SADS diagnosis and their relatives who have applied for insurance (health, life, travel, and disability) or have existing insurance coverage. Of 202 participants, 92% had a SADS diagnosis (92%) as either a proband (50%) or an affected relative (42%); 8% of participants were unaffected family members of a proband; and genetic confirmation was reported by 73%. Of the 54% of SADS respondents who applied for insurance, 60% were rejected by insurers. The preexisting SADS diagnosis was the major reason reported for rejection (57%). Most respondents (80%) had insurance coverage through a spouse/parent plan at the time of diagnosis; 14% experienced a subsequent negative effect on coverage. Thirty-nine percent of affected SADS respondents reported an increase in insurance premium rates.
  
  
  CONCLUSIONS
  Increased genetic testing has negatively impacted insurability for SADS patients and affected family members. The challenges in obtaining life and health insurance are mainly because of the preexisting condition, even in the presence of protective laws in the United States.
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Saira
authors.initials: S
authors.lastname: Mohammed
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Zaneta
authors.initials: Z
authors.lastname: Lim
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Paige H
authors.initials: PH
authors.lastname: Dean
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: James E
authors.initials: JE
authors.lastname: Potts
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Jessica N C
authors.initials: JN
authors.lastname: Tang
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Susan P
authors.initials: SP
authors.lastname: Etheridge
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Alice
authors.initials: A
authors.lastname: Lara
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Pam
authors.initials: P
authors.lastname: Husband
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Elizabeth D
authors.initials: ED
authors.lastname: Sherwin
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.).
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Ackerman
authors.affiliation: From the Division of Cardiology, British Columbia Children's Hospital, Department of Pediatrics, The University of British Columbia, Vancouver, Canada (S.M., Z.L., P.H.D., J.E.P., J.N.C.T., E.D.S., S.S.); Department of Pediatrics, University of Utah, Primary Children's Hospital, Salt Lake City (S.P.E.); Sudden Arrhythmia Death Syndromes Foundation of the USA, Salt Lake City, UT (A.L.); The Canadian Sudden Arrhythmia Death Syndromes Foundation, Mississauga, Ontario (P.H.); and Department of Medicine, Pediatrics, and Molecular Pharmacology and Experimental Therapeutics, Divisions of Cardiovascular Diseases and Pediatric Cardiology, Windland Smith Rice Sudden Death Genomics Laboratory, Mayo Clinic, Rochester, MN (M.J.A.). ssanatani@cw.bc.ca.
authors.forename: Shubhayan
authors.initials: S
authors.lastname: Sanatani
mesh_terms: D001145:Arrhythmias, Cardiac / Q000150:complications / Q000175:diagnosis / Q000235:genetics*; D003430:Cross-Sectional Studies; D016757:Death, Sudden, Cardiac / Q000209:etiology*; D004608:Eligibility Determination; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D019538:Health Care Surveys; D040941:Heredity; D006801:Humans; D019458:Insurance Coverage; D018868:Insurance, Disability; D007348:Insurance, Health; D007352:Insurance, Life; D009656:North America; D010375:Pedigree; D010641:Phenotype; D011237:Predictive Value of Tests; D064266:Preexisting Condition Coverage; D012307:Risk Factors
keywords: Long QT syndrome; genetic testing; genetics; insurance coverage; syndrome