Making decisions

You must decide whether a young person is able to understand the nature, purpose and possible consequences of investigations or treatments you propose, as well as the consequences of not having treatment. Only if they are able to understand, retain, use and weigh this information, and communicate their decision to others can they consent to that investigation or treatment.⁷ That means you must make sure that all relevant information has been provided and thoroughly discussed before deciding whether or not a child or young person has the capacity to consent.

The capacity to consent depends more on young people’s ability to understand and weigh up options than on age. When assessing a young person’s capacity to consent, you should bear in mind that:

1. at 16 a young person can be presumed to have the capacity to consent (see paragraphs 30 to 33)
2. a young person under 16 may have the capacity to consent, depending on their maturity and ability to understand what is involved.⁸ 

It is important that you assess maturity and understanding on an individual basis and with regard to the complexity and importance of the decision to be made. You should remember that a young person who has the capacity to consent to straightforward, relatively risk-free treatment may not necessarily have the capacity to consent to complex treatment involving high risks or serious consequences.⁹ The capacity to consent can also be affected by their physical and emotional development and by changes in their health and treatment.

Respect for young people’s views is important in making decisions about their care. If they refuse treatment, particularly treatment that could save their life or prevent serious deterioration in their health, this presents a challenge that you need to consider carefully.

Parents cannot override the competent consent of a young person to treatment that you consider is in their best interests. But you can rely on parental consent when a child lacks the capacity to consent. In Scotland parents cannot authorise treatment a competent young person has refused.¹³ In England, Wales and Northern Ireland, the law on parents overriding young people’s competent refusal is complex.¹⁴ You should seek legal advice if you think treatment is in the best interests of a competent young person who refuses.¹⁵ 

You must carefully weigh up the harm to the rights of children and young people of overriding their refusal against the benefits of treatment, so that decisions can be taken in their best interests.¹⁶ In these circumstances, you should consider involving other members of the multi-disciplinary team, an independent advocate, or a named or designated professional or a lead clinician for child protection. Legal advice may be helpful in deciding whether you should apply to the court to resolve disputes about best interests that cannot be resolved informally.

You should also consider involving these same colleagues before seeking legal advice if parents refuse treatment that is clearly in the best interests of a child or young person who lacks capacity, or if both a young person with capacity and their parents refuse such treatment.¹⁷ For further guidance on these issues see GMC guidance on decision making and consent and treatment and care towards the end of life.

Both the GMC and the law permit procedures that do not offer immediate or obvious therapeutic benefits for children or young people, so long as they are in their best interests (see paragraphs 12 and 13) and performed with consent (see paragraph 27).  Certain procedures are, however, barred by law.¹⁸ 

To assess their best interests you should consider the religious and cultural beliefs and values of the child or young person and their parents as well as any social, psychological and emotional benefits. This may be relevant in circumcision of male children for religious or cultural reasons¹⁹ , or surgical correction²⁰  of physical characteristics that do not endanger the child’s life or health.

Research involving children and young people can benefit all children; but they may be vulnerable because they cannot always recognise their best interests, express their needs or defend their rights.

Children or young people should be involved in research only when research on adults cannot provide the same benefits. They can be involved in research that has either:

1. potential benefits for children or young people generally, as long as the research does not go against their best interests or involves only minimal or low risk of harm (this would be research that involves, for example, asking questions or taking blood samples, the assessment of the risk depending on the view of the child or young person), or
2. potential therapeutic benefits for them that outweigh any foreseeable risks, which should be kept as low as possible.

Children and young people should not usually be involved in research if they object or appear to object in either words or actions, even if their parents consent. If they are able to consent for themselves, you should still consider involving their parents, depending on the nature of the research.²¹ 

You must not put pressure on children, young people or their parents to consent to research in the expectation of therapeutic, financial or any other benefit.

Before involving children or young people in research²²  you should seek advice and get the necessary approval from a relevant research ethics committee, the Medical Research Council²³ or a medical royal college.²⁴ 

The Human Tissue Act 2004 and Human Tissue (Scotland) Act 2006 were passed following inquiries into the storage of children’s organs and tissue without the proper consent.  The Acts make consent central to the lawful storage and use of children and young people’s organs and tissue, and to the removal of such material after death. The Human Tissue Authority regulates and issues codes of practice on activities covered by the Act in England, Wales and Northern Ireland. Scottish ministers have those powers in Scotland.