Genetic testing for children and adolescents. Who decides?

Area of Science:

• Medical Genetics
• Bioethics
• Pediatric Psychology

Background:

• Advancements in DNA-based tests for diagnosing genetic disorders and predispositions are rapidly emerging.
• Predictive genetic testing in healthy children and adolescents raises complex ethical, legal, and psychological considerations.

Purpose of the Study:

• To explore the ethical, legal, and psychological implications of genetic testing in minors.
• To examine the potential benefits and harms of genetic testing on children's well-being and family relationships.
• To propose guidelines for predictive genetic testing and counseling for children.

Main Methods:

• Review of legal history and current status of minors' healthcare consumer rights.
• Analysis of psychosocial research on adolescent decision-making capacity.
• Examination of national commission views on assent and informed consent ages.
• Discussion of ethical and legal requirements for competence in minors.

Main Results:

• Genetic testing may provide medical or psychological benefits but can negatively impact parent-child relationships and a child's self-concept.
• Clinicians face challenges balancing parental wishes with a child's or adolescent's autonomy.
• The study addresses issues of maturity, competence, intrafamilial dynamics, and disclosure of genetic information.

Conclusions:

• Careful consideration of risks and benefits is crucial for predictive genetic testing in children.
• Guidelines are needed to navigate the complexities of genetic testing, counseling, and decision-making for minors.
• Ethical and legal frameworks must be established to protect children undergoing genetic testing.