Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents

Area of Science:

• Genetics and Bioethics
• Adolescent Medicine
• Medical Law and Ethics

Background:

• Current policies generally exclude minors from Huntington's predictive genetic testing due to ethical principles and lack of evidence on impact.
• This exclusion is based on non-maleficence, autonomy, and confidentiality, but may not align with evolving legal perspectives on minors' consent.
• Developmental psychology research indicates adolescents possess the capacity for informed decision-making regarding their health.

Purpose of the Study:

• To examine the ethical and legal considerations surrounding adolescents requesting Huntington's predictive genetic testing.
• To challenge the blanket exclusion of minors from predictive genetic testing based on age alone.
• To propose a framework for assessing adolescents' competence to consent to genetic testing.

Main Methods:

• Review of current ethical guidelines and UK case law regarding minors' consent to medical treatment.
• Analysis of developmental psychology research on adolescent decision-making capabilities.
• Formulation of criteria for a case-by-case competence assessment approach.

Main Results:

• Adherence to age-based exclusion criteria for Huntington's predictive testing may conflict with legal trends recognizing minors' autonomy.
• Adolescents demonstrate capacity for informed health choices, suggesting a need for individualized assessment rather than blanket exclusion.
• Assessing competence requires clinicians to manage uncertainty inherent in case-by-case evaluations.

Conclusions:

• Current policies on predictive genetic testing for Huntington's disease in minors require re-evaluation.
• A shift towards assessing individual competence, rather than relying solely on age, is advocated.
• This approach respects adolescent autonomy while navigating ethical and clinical complexities.