Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death

Dorit Barlevy, David Wasserman, Marina Stolerman, Kathleen E. Erskine, Siobhan M. Dolan

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

Background: With current genetic technology, it is possible to detect mutations associated with long QT syndrome (LQTS), a hereditary cardiac arrhythmia syndrome. As a result, prospective parents diagnosed with LQTS will have to decide whether or not to prevent its transmission to future generations, either by not procreating or through the use of assisted reproductive technologies or prenatal testing. This article explores how a hereditary predisposition to sudden cardiac death can influence reproductive decision making. Methods: This study draws from interviews and focus groups with individuals who have personal or family histories of cardiac arrhythmia or sudden death. A keyword search was conducted on interview transcripts to identify quotes for analysis. Results: Participants expressed complex, often ambivalent attitudes about the prospect of having a child with a predisposition to sudden cardiac death. Their comments reveal conflicting understandings of genetic responsibility and reflect the variable effects of personal experience on reproductive decision making. This article compares attitudes toward LQTS and other genetic conditions in analyzing the themes that emerged in interviews and focus groups. Conclusions: The "disability critique" of prenatal testing should be applied carefully to the context of genetic predisposition to sudden cardiac death in order to understand reproductive decision making. Firsthand experience with the condition, among other factors, can weigh heavily in those decisions.

Original languageEnglish (US)
Pages (from-to)30-39
Number of pages10
JournalAJOB Primary Research
Volume3
Issue number3
DOIs
StatePublished - Jul 2012

Fingerprint

Long QT Syndrome
Sudden Cardiac Death
Genetic Predisposition to Disease
Decision Making
Interviews
Focus Groups
death
decision making
Cardiac Arrhythmias
Assisted Reproductive Techniques
interview
Social Responsibility
Sudden Death
Parents
genealogy
Technology
Mutation
experience
parents
Group

Keywords

  • genetic responsibility
  • LQTS
  • parental responsibility
  • prenatal testing
  • reproductive decision making
  • sudden cardiac death

ASJC Scopus subject areas

  • Health Policy

Cite this

Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death. / Barlevy, Dorit; Wasserman, David; Stolerman, Marina; Erskine, Kathleen E.; Dolan, Siobhan M.

In: AJOB Primary Research, Vol. 3, No. 3, 07.2012, p. 30-39.

Research output: Contribution to journalArticle

Barlevy, Dorit ; Wasserman, David ; Stolerman, Marina ; Erskine, Kathleen E. ; Dolan, Siobhan M. / Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death. In: AJOB Primary Research. 2012 ; Vol. 3, No. 3. pp. 30-39.
@article{cec75006f3b94a6da2ea292025381130,
title = "Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death",
abstract = "Background: With current genetic technology, it is possible to detect mutations associated with long QT syndrome (LQTS), a hereditary cardiac arrhythmia syndrome. As a result, prospective parents diagnosed with LQTS will have to decide whether or not to prevent its transmission to future generations, either by not procreating or through the use of assisted reproductive technologies or prenatal testing. This article explores how a hereditary predisposition to sudden cardiac death can influence reproductive decision making. Methods: This study draws from interviews and focus groups with individuals who have personal or family histories of cardiac arrhythmia or sudden death. A keyword search was conducted on interview transcripts to identify quotes for analysis. Results: Participants expressed complex, often ambivalent attitudes about the prospect of having a child with a predisposition to sudden cardiac death. Their comments reveal conflicting understandings of genetic responsibility and reflect the variable effects of personal experience on reproductive decision making. This article compares attitudes toward LQTS and other genetic conditions in analyzing the themes that emerged in interviews and focus groups. Conclusions: The {"}disability critique{"} of prenatal testing should be applied carefully to the context of genetic predisposition to sudden cardiac death in order to understand reproductive decision making. Firsthand experience with the condition, among other factors, can weigh heavily in those decisions.",
keywords = "genetic responsibility, LQTS, parental responsibility, prenatal testing, reproductive decision making, sudden cardiac death",
author = "Dorit Barlevy and David Wasserman and Marina Stolerman and Erskine, {Kathleen E.} and Dolan, {Siobhan M.}",
year = "2012",
month = "7",
doi = "10.1080/21507716.2012.662573",
language = "English (US)",
volume = "3",
pages = "30--39",
journal = "AJOB Empirical Bioethics",
issn = "2329-4515",
publisher = "Taylor and Francis Ltd.",
number = "3",

}

TY - JOUR

T1 - Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death

AU - Barlevy, Dorit

AU - Wasserman, David

AU - Stolerman, Marina

AU - Erskine, Kathleen E.

AU - Dolan, Siobhan M.

PY - 2012/7

Y1 - 2012/7

N2 - Background: With current genetic technology, it is possible to detect mutations associated with long QT syndrome (LQTS), a hereditary cardiac arrhythmia syndrome. As a result, prospective parents diagnosed with LQTS will have to decide whether or not to prevent its transmission to future generations, either by not procreating or through the use of assisted reproductive technologies or prenatal testing. This article explores how a hereditary predisposition to sudden cardiac death can influence reproductive decision making. Methods: This study draws from interviews and focus groups with individuals who have personal or family histories of cardiac arrhythmia or sudden death. A keyword search was conducted on interview transcripts to identify quotes for analysis. Results: Participants expressed complex, often ambivalent attitudes about the prospect of having a child with a predisposition to sudden cardiac death. Their comments reveal conflicting understandings of genetic responsibility and reflect the variable effects of personal experience on reproductive decision making. This article compares attitudes toward LQTS and other genetic conditions in analyzing the themes that emerged in interviews and focus groups. Conclusions: The "disability critique" of prenatal testing should be applied carefully to the context of genetic predisposition to sudden cardiac death in order to understand reproductive decision making. Firsthand experience with the condition, among other factors, can weigh heavily in those decisions.

AB - Background: With current genetic technology, it is possible to detect mutations associated with long QT syndrome (LQTS), a hereditary cardiac arrhythmia syndrome. As a result, prospective parents diagnosed with LQTS will have to decide whether or not to prevent its transmission to future generations, either by not procreating or through the use of assisted reproductive technologies or prenatal testing. This article explores how a hereditary predisposition to sudden cardiac death can influence reproductive decision making. Methods: This study draws from interviews and focus groups with individuals who have personal or family histories of cardiac arrhythmia or sudden death. A keyword search was conducted on interview transcripts to identify quotes for analysis. Results: Participants expressed complex, often ambivalent attitudes about the prospect of having a child with a predisposition to sudden cardiac death. Their comments reveal conflicting understandings of genetic responsibility and reflect the variable effects of personal experience on reproductive decision making. This article compares attitudes toward LQTS and other genetic conditions in analyzing the themes that emerged in interviews and focus groups. Conclusions: The "disability critique" of prenatal testing should be applied carefully to the context of genetic predisposition to sudden cardiac death in order to understand reproductive decision making. Firsthand experience with the condition, among other factors, can weigh heavily in those decisions.

KW - genetic responsibility

KW - LQTS

KW - parental responsibility

KW - prenatal testing

KW - reproductive decision making

KW - sudden cardiac death

UR - http://www.scopus.com/inward/record.url?scp=84862592663&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84862592663&partnerID=8YFLogxK

U2 - 10.1080/21507716.2012.662573

DO - 10.1080/21507716.2012.662573

M3 - Article

AN - SCOPUS:84862592663

VL - 3

SP - 30

EP - 39

JO - AJOB Empirical Bioethics

JF - AJOB Empirical Bioethics

SN - 2329-4515

IS - 3

ER -