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Related Experiment Videos

Self-selection in predictive testing for Huntington's disease

A M Codori1, R Hanson, J Brandt

  • 1Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Johns Hopkins Hospital, Baltimore, Maryland 21287-7218.

American Journal of Medical Genetics
|September 15, 1994
PubMed
Summary
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Psychological reactions to predictive genetic testing for Huntington's disease (HD) may be favorable due to self-selection. Individuals avoiding HD testing often fear emotional coping challenges, suggesting caution as testing becomes more widespread.

Area of Science:

  • Genetics
  • Psychology
  • Medical Ethics

Background:

  • Previous studies indicate positive psychological responses to predictive Huntington's disease (HD) testing.
  • However, limited uptake suggests some at-risk individuals avoid testing due to fears of emotional distress.
  • Favorable reactions might stem from self-selected individuals confident in their coping abilities.

Purpose of the Study:

  • To investigate the psychological factors influencing decisions regarding predictive Huntington's disease (HD) testing.
  • To compare the anticipated emotional responses of individuals who have undergone testing versus those who have not.
  • To assess the potential impact of increased accessibility on the psychological outcomes of HD genetic testing.

Main Methods:

  • A survey was conducted among individuals at risk for Huntington's disease (HD).
Keywords:
Empirical ApproachGenetics and Reproduction

Related Experiment Videos

  • Participants included 32 individuals who had considered but not undergone testing, and 66 who had been previously tested.
  • Untested individuals were categorized into 'No' (decided against testing) and 'Maybe' (postponed testing) groups.

    • Main Results:

    • A significantly higher proportion of the 'No' group cited anticipated emotional difficulties as the reason for not testing, compared to the 'Maybe' group.
    • Individuals in the 'Tested' group reported fewer anticipated emotional problems.
    • Among tested individuals who did anticipate problems, most expressed confidence in their coping mechanisms.

    Conclusions:

    • Individuals undergoing predictive Huntington's disease (HD) genetic testing appear to be psychologically pre-selected for positive responses.
    • Concerns exist that wider adoption of HD testing, driven by technological simplification and medical acceptance, may not yield universally favorable psychological outcomes.
    • There is a need for caution regarding assumptions about widespread positive psychological reactions as HD genetic testing becomes more accessible.