Education and debateCan children and young people consent to be tested for adult onset genetic disorders?Commentary: Weighing burdens and benefits rather than competence

doi:10.1136/bmj.318.7190.1063

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Can children and young people consent to be tested for adult onset genetic disorders?

Donna L Dickenson, Leverhulme senior lecturer in medical ethics and law (d.dickenson@ic.ac.uk)

Department of Primary Health Care and General Practice, Imperial College of Science, Technology and Medicine, London W2 1PG
Johns Hopkins Medical Institutions, 550 N Broadway, Baltimore, MD 21205-2004, USA

Accepted 15 December 1998

What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to be tested in terms of good practice, case and statute law, empirical evidence, and ethics.

Existing case law allows competent young people under 18 to consent to testing for adult onset genetic disorders
Many clinical genetics units operate a bar at 18
Genetics units and referring general practitioners need to think whether they are being paternalistic in denying the test to a competent minor
Each case should be considered on its own merits, taking into account the seriousness of the disorder and balancing that against the emotional and cognitive competence of the young person
This approach is consistent with new guidelines

Case study

Consider the following case. As a general practitioner, you are confronted with Alison, an intelligent 15 year old girl whose father has recently tested positive for Huntington's disease. His own mother died of the condition before Alison was born. Alison wants to know whether she too will develop Huntington's disease. Her parents, who have accompanied her to the surgery, support her wish. Alison's mother is herself contemplating genetic testing for the BRCA1 gene implicated in some breast cancers, because her mother and elder sister died from the disease. You know that the clinical genetics unit serving your patients will not test anyone under 18, although Alison can have counselling. You point out that according to the unit's careful protocol even those over 18 must undergo counselling …

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