Sunday, August 06, 2006

#13 'Informed Consent'

Moving on from whether consent is sought at all before information is stored on a database and/or shared with other agencies, it’s important also to consider how – and from whom - consent is gained. ‘Informed consent’ means that the person giving it fully understands what they are agreeing to, and feels under no pressure to give a particular response.

We’ve already seen that Connexions asks for ‘blanket’ consent to allow information to be put on to a database and allow agencies to access it over a period of time. Is that reasonable? Someone of 14 - and their parents - might be perfectly willing to have information about, say, the young person's dyslexia stored and shared, but if a year later that same young person is going to need help with a drug problem, or become pregnant, how is anyone to foresee the problems that sharing such information may cause?

What about sharing information about others? The guidance to the CAF advises that information should be put in context (‘Michael said he thinks his dad is an alcoholic’) but unless there are genuine concerns about possible abuse, should that information be recorded at all without the consent of Michael’s dad?

It seems to have become accepted practice that any teenager can be approached directly for consent without the knowledge of their parents, so long as the agency thinks they are ‘Gillick competent’ to give such consent. This notion comes from a House of Lords judgment in a 1985 case, where Mrs Gillick sought to prevent her Area Health Authority from giving her under-age daughters contraceptive advice.

The Law Lords ruled that, if a doctor or other NHS worker believed the young person was capable of understanding the advice given to her and could not be persuaded to involve her parents, then it was lawful for the doctor to offer treatment without parental knowledge. This judgment was recently reinforced by a similar case, where a Ms Axon sought to prevent doctors offering abortion to her underage daughters without her knowledge.

The important point about the Gillick case is that it provided an exception to the common law principle that parents have responsibility for their underage children. It should also be remembered that the House of Lords judgment laid repeated stress upon the importance of seeking to persuade the young person at least to allow her parents to be informed, and warned that their judgment:
“ought not to be regarded as a licence for doctors to disregard the wishes of parents on this matter whenever they find it convenient to do so. Any doctor who behaves in such a way would be failing to discharge his professional responsibilities, and I would expect him to be disciplined by his own professional body accordingly.”
Even if one believes that the Gillick judgment can be expanded to cover situations other than a medical setting – and that has not been tested in the courts – offering a service to a young person where s/he flatly refuses parental involvement is substantially different from assessing the young person’s competence to consent first, and only involving parents if it becomes essential. How can such a presumption in favour of excluding parents completely from the decision-making process be justified?

The setting in which consent is sought matters, too, and it also makes a difference if a young person has been the subject of a referral, or has been approached after being 'identified' as needing a service, rather than having initiated the contact. If consent is sought at school, or when a young person is anxious to get one particular service, s/he may feel obliged to appear as cooperative as possible, or find it difficult to articulate objections when faced with an adult who appears to be in a position of power.

The whole area of ‘informed consent’ has become very muddy. A 15-year-old cannot ‘consent’ to, say, go on a school trip, and parents are increasingly being held responsible for their children’s behaviour through the use of Parenting Orders, fines and even imprisonment. Apart from exceptional cases, they are also responsible for supporting their children financially until at least 18. The goalposts of parental responsibility are constantly being shifted. It is anomalous, then, that a parent can be excluded from decisions about sharing information of events in their child’s life that may have serious consequences for everyone concerned - moreover, events that may actually be about the parents or other family members!

While it is undoubtedly important that a child or young person can seek help and advice in confidence, and may be perfectly capable of consenting to counselling or medical treatment, this is not the same as being competent to understand the full implications of complex acts of data-sharing.

The entire subject of consent needs open, public debate. Research has repeatedly shown that young people themselves are very uneasy about information sharing, and there is also growing concern that the role of parents and family in children’s lives is being systematically undermined.


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