Journal of Genetic Counseling

, Volume 24, Issue 3, pp 532–540 | Cite as

Congruence-Incongruence Patterns in Alpha-1 Antitrypsin Deficiency Couples’ Genetic Determinist Beliefs and Perceived Control over Genes: Implications for Clinical and Public Health Genomic Communication

  • Roxanne L. Parrott
  • Rachel A. Smith
  • Soo Jung Hong
  • Amber Worthington
Original Research

Abstract

Genomics makes possible the isolation of multiple genes as co-factors that increase, but do not determine, risk for many adult-onset medical conditions, including alpha-1 antitrypsin deficiency (AATD). Those diagnosed with an adult-onset medical condition, such as AATD, are often married and make decisions about testing and care as a couple. We examined genetic essentialist and threat beliefs, focusing on beliefs about the genetic contribution to disease susceptibility and severity, as well as perceptions of control related to genes and health for married couples (N =59), in which one spouse has been tested for genetic mutations associated with AATD. The intraclass correlation for spouses’ beliefs about genetic essentialism was strong and statistically significant, but the associations for their other beliefs were not. Incongruence between AATD participants and their spouses regarding genes’ influence on disease severity directly related to incongruent perceptions of control and genetic contribution to disease susceptibility. Results revealed an inverse relationship to AATD participants’ perceptions of behavioral control and a direct relationship to their beliefs about genes’ influence on disease severity. This suggests a pattern of incongruence in which AATD participants have low levels of perceived control over genes’ influence on health and high levels of perceived genetic influence on disease severity compared to spouses. With public health communication efforts lagging behind the science of genomics, insights regarding the congruence or incongruence associated with married couples’ beliefs about genes’ influence on disease afford pathways to guide clinical and public health communication about genomics.

Keywords

Communication Perceived control Couples AATD Genetic determinism Beliefs 

Notes

Conflict of Interest Statement

Conflict of Interest. Parrott and Smith received grant funding from the Alpha-1 Foundation, and the National Institutes of Health through the National Human Genome Research Institute. Smith received funding through the National Institute of Drug Abuse at NIH. Hong and Worthington declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures performed involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent was obtained from all individual participants included in the study.

Animal Studies

This article does not contain any studies with animals performed by any of the authors.

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Copyright information

© National Society of Genetic Counselors, Inc. 2014

Authors and Affiliations

  • Roxanne L. Parrott
    • 1
  • Rachel A. Smith
    • 1
    • 2
  • Soo Jung Hong
    • 1
  • Amber Worthington
    • 1
  1. 1.Communication Arts and SciencesThe Pennsylvania State UniversityUniversity ParkUSA
  2. 2.Human Development & Family Studies, Center for Infectious Disease Dynamics, and the Methodology CenterThe Pennsylvania State UniversityUniversity ParkUSA

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