Should Parents Test Kids for Adult-Onset Conditions?

What the professional guidance says

The AAP and ACMG statement, "Ethical and Policy Issues in Genetic Testing and Screening of Children," sets the benchmark that many clinics follow. Its main points for this question:

• Parents may authorize predictive testing for children at risk of childhood-onset conditions, and the child's assent should ideally be sought.
• Testing for adult-onset conditions generally should be deferred unless an intervention begun in childhood may reduce illness or death.
• Carrier testing for recessive conditions is generally deferred until adulthood.
• Clinicians should be cautious about testing minors without involving their parents or guardians, because results affect the family.
• The groups strongly discourage direct-to-consumer and home kit genetic testing of children, citing limited oversight of test content, accuracy and interpretation.

The guiding principle running through the statement is that decisions about offering testing should be driven by the best interest of the child. That is a different test from what a parent finds reassuring, and it is why an adult-onset result with no childhood benefit is usually set aside for later.

This is the 2013 statement. Guidance is revised over time, so ask a genetic counselor which recommendations your clinic follows now.

The case for waiting

Autonomy. A person who learns at 40 that they carry a gene for a late-onset disease can weigh that knowledge in adult terms: career, relationships, insurance, family planning. A child who is tested cannot make that decision. Our guide to predictive testing for Huntington's disease shows how many adults at risk choose not to know.

No medical benefit now. If surveillance, treatment or prevention would not begin until adulthood, early results add worry without changing care.

Psychological and social effects. Children can be treated differently once labelled "at risk," by parents, teachers or themselves. Siblings may be affected too.

Privacy and insurance. A result becomes part of a medical record. In the United States, federal law covers health insurance and employment but not life, disability or long-term care policies, as set out in our GINA explainer, so a childhood result can follow someone for decades.

The result might not mean what it seems. Classifications change, and many results turn out to be variants of uncertain significance. A child cannot easily revisit the decision to be tested.

When earlier testing can be right

When childhood action exists. The statement's key test is whether an intervention in childhood may reduce harm. For some inherited conditions, doctors may begin monitoring or treatment before adulthood. Examples in our library include TP53-related cancer risk and familial hypercholesterolemia. Whether a specific test is appropriate for a specific child is a decision for a pediatric genetics team, not a kit.

When uncertainty itself is harming the family. The statement allows that an exception might be made for families for whom diagnostic uncertainty poses a significant psychosocial burden. That is a clinical judgment made with a counselor, usually when an adolescent and parents both want to know.

When symptoms exist. Diagnostic testing of a child who is already unwell is a different matter from predictive testing, and it follows ordinary medical reasoning.

Newborn sequencing is a separate question

Research programs that sequence babies at birth generally focus on conditions where early action matters, and they run under study protocols and consent processes. See our overviews of newborn genome sequencing programs and whether to test your baby after birth. Those programs do not change the guidance above for testing a healthy older child for adult-onset risk.

Nothing is lost by asking first. If a pediatrician or genetic counselor confirms that nothing would change in childhood, you can write down the family variant and your reasoning, so that your child can request testing as an adult with the full picture. Meanwhile, the usual healthy habits and routine pediatric care continue as normal.

If you are deciding right now

1. Ask what would change in childhood. If the answer is "nothing," waiting is the default position.
2. See a genetic counselor first. Our guide to when to see a genetic counselor explains what the visit covers.
3. Do not use a consumer kit on a child for health questions. The AAP and ACMG advise strongly against it.
4. Include the child as they grow. The statement encourages telling children their results at an appropriate age, and honoring a mature adolescent's request for results.
5. Remember your own result is partly theirs. A parent's finding can imply a one-in-two chance for a child in some inheritance patterns. See how one relative's test affects the family.

Bottom line

For adult-onset conditions, the default is to wait and let the child decide as an adult, unless early monitoring or treatment would help. If you think the exception applies, work through it with a genetics clinician rather than ordering a test online.

Common questions

Medical disclaimer. GenomeTesting.org publishes educational content about genetics and consumer genomic testing. Nothing here is medical advice, a diagnosis, or a substitute for care from a qualified clinician or genetic counsellor. Decisions about testing, treatment, or interpreting your own results should be made with a healthcare professional who can see your full history.