Genetic Insurance Discrimination in Sudden Arrhythmia Death Syndromes Empirical Evidence from a Cross-Sectional Survey in North America

Saira Mohammed, Zaneta Lim, Paige H. Dean, James E. Potts, Jessica N C Tang, Susan P. Etheridge, Alice Lara, Pam Husband, Elizabeth D. Sherwin, Michael John Ackerman, Shubhayan Sanatani

Research output: Contribution to journalArticle

4 Citations (Scopus)

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. Methods and Results-To explore the insurance coverage experiences of SADS-affected families, we adminis ered a cross-sectional online survey across North America from April 28, 2012 to November 13, 2013. Participant 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.

Original languageEnglish (US)
Article number001442
JournalCirculation: Cardiovascular Genetics
Volume10
Issue number1
DOIs
StatePublished - Feb 1 2017

Fingerprint

North America
Sudden Death
Insurance
Cardiac Arrhythmias
Cross-Sectional Studies
Insurance Coverage
Genetic Testing
Life Insurance
Health Insurance
Insurance Carriers
Preexisting Condition Coverage
Spouses

Keywords

  • genetic testing
  • genetics
  • Long QT syndrome
  • nsurance coverage
  • syndrome

ASJC Scopus subject areas

  • Genetics
  • Cardiology and Cardiovascular Medicine
  • Genetics(clinical)

Cite this

Genetic Insurance Discrimination in Sudden Arrhythmia Death Syndromes Empirical Evidence from a Cross-Sectional Survey in North America. / Mohammed, Saira; Lim, Zaneta; Dean, Paige H.; Potts, James E.; Tang, Jessica N C; Etheridge, Susan P.; Lara, Alice; Husband, Pam; Sherwin, Elizabeth D.; Ackerman, Michael John; Sanatani, Shubhayan.

In: Circulation: Cardiovascular Genetics, Vol. 10, No. 1, 001442, 01.02.2017.

Research output: Contribution to journalArticle

Mohammed, Saira ; Lim, Zaneta ; Dean, Paige H. ; Potts, James E. ; Tang, Jessica N C ; Etheridge, Susan P. ; Lara, Alice ; Husband, Pam ; Sherwin, Elizabeth D. ; Ackerman, Michael John ; Sanatani, Shubhayan. / Genetic Insurance Discrimination in Sudden Arrhythmia Death Syndromes Empirical Evidence from a Cross-Sectional Survey in North America. In: Circulation: Cardiovascular Genetics. 2017 ; Vol. 10, No. 1.
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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. Methods and Results-To explore the insurance coverage experiences of SADS-affected families, we adminis ered a cross-sectional online survey across North America from April 28, 2012 to November 13, 2013. Participant 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.",
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AU - Tang, Jessica N C

AU - Etheridge, Susan P.

AU - Lara, Alice

AU - Husband, Pam

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N2 - 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. Methods and Results-To explore the insurance coverage experiences of SADS-affected families, we adminis ered a cross-sectional online survey across North America from April 28, 2012 to November 13, 2013. Participant 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.

AB - 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. Methods and Results-To explore the insurance coverage experiences of SADS-affected families, we adminis ered a cross-sectional online survey across North America from April 28, 2012 to November 13, 2013. Participant 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.

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