Young people and the issue of consent. It’s an emotive subject, but not one we should ignore. Especially at Easter. Why Easter? Because it reminds me of a very important legal case which established that young people can exercise certain rights to consent, even when they don’t want their parents to know what they have consented to, or when they fear that their parents might have firmly disapproved. The case actually involved the issue of contraception. And, as Easter commemorates an event central to the teachings of the Roman Catholic Church, I thought it was apt.
It’s also a topical issue as public interest is increasing about the types of location based services that are currently available. One side of the fence wants anyone to be able to subscribe to these location based services. Lots of them look quite fun, and others are obviously very handy for certain things. But the other side of the fence wishes them to be “adult only” services, or at least placed behind age restriction bars. This to prevent children from being abused by predators who, it is feared, will take advantage of the location information made available on line about children and cause them harm.
The trouble is, of course, on the internet, the only “quick and dirty” age restriction tool currently available is that which is used by the credit providers. But, if its really the only one that is to be permitted to be used, then only the over18s and the credit worthy may get the chance to use location based applications. So that’s likely to be a non-starter, as far as the apps providers are concerned.
Surely though, there’s no need to reinvent the wheel here. There will be other circumstances where young people may need the assistance of professionals to provide them with various services, and surely there must have been ethical committees that have created rules that the location based services industry could apply too, if it wanted?
Yep, and as I sat in another data protection meeting at the offices of the Wellcome Trust, a medical charity, a few days go, the penny dropped. Let’s just gloriously plagiarise the standards that the medical community have used for the past few decades. If it’s ok for your spots, then it must be ok for your location applications, too.
So what advice does the medical profession give, and how easily can their advice on “consent” be translated into data protection terms and applied to applications involving location based information? I had a quick squint at the material on the Department of Health’s website and at www.patient.co.uk and now offer, for further consideration, a general practical guide to applying medical standards to obtaining consent from children and young people. I don't really like that descriptive term. I wonder if it'll eventually be replaced by, say, "emerging adults"?
Anyway, here goes.
Young people should be involved as much as possible in decisions about their LBS applications, even when they are not able to make decisions on their own.
General principles
• When obtaining consent, the apps provider should establish whether the person is legally competent (in legal terms, 'have capacity' to give consent).
• Everyone aged 16 and over is presumed in law to have the capacity to consent unless there is evidence to the contrary.
• If a young person is deemed not legally competent, consent will need to be obtained from someone with parental responsibility, unless it is an emergency.
• The legal position differs, depending on whether they are aged over or under 16.
Young people aged 16 and 17
• Once someone reaches the age of 16, they are presumed in law to be competent. In many respects they should be treated as adults and can give consent for their own lbs applications.
• It is nevertheless good practice to encourage them to involve their families in such decisions, unless it would not be in their interests to do so. This can be achieved by the lbs applications provider producing guidance along the lines of “If you are under 18 please tell your parents you have downloaded this application”.
• Someone aged 16-18 cannot refuse an lbs application if it has been agreed by a person with parental responsibility or the Court, and it is in their best interests. Therefore they do not have the same status as adults. (But they can always try and turn their device off if they don’t want to be tracked!)
Young people under the age of 16
• People in this age group are not deemed to be automatically legally competent to give consent.
• The courts have determined that they can be legally competent if they have "sufficient understanding and maturity to enable them to understand fully what is proposed".
• This concept - now known as Gillick competency - was developed some 25 years ago, in the case of Gillick v West Norfolk & Wisbech HA, back in 1986. The term Fraser competency is also used in this respect (Lord Fraser was the judge who ruled on the case).
• Much will depend on the transparency of the lbs apps provider’s privacy policy, and with whom the location information is being shared.
• A young person who has the capacity to consent to a straightforward, relatively risk-free application may not necessarily have the capacity to consent to an application involving high risks or serious consequences.
• The emphasis in the ethical guidance is that the their families should be involved in decisions about them, unless there is a good reason for not doing so.
• If however, a competent person under the age of 16 is insistent that their family should not be involved, their right to confidentiality must be respected, unless such an approach would put them at serious risk of harm.
I like the approach used by the Department of Health’s guide for children and young people on “Consent – what you have a right to expect”, as it uses no-nonsense language to make it clear to them about their rights and responsibilities. First published in July 2001, the text remains fresh and direct and, suitably adapted, would make an excellent privacy policy:
When can you give consent for yourself?
Always if you’re 16-18 years old
You can give consent to being examined or treated in the same way that adults can. If you agree to a particular treatment, the doctor or nurse does not have to ask your parents for consent as well. But if you decide to refuse a particular treatment, sometimes your parents may get involved.
Sometimes if you’re under 16
If you are under 16, you may still be able to give consent for yourself – provided you’re able to understand what is involved in the proposed treatment. This means that you may be able to agree by yourself to some treatments, investigations or immunisations, and not to others. For
example, if you’re 13 or 14, you may be able to give consent yourself for an injection to protect you against meningitis. However, the information needed for agreeing to something as serious as a heart operation might be too much to weigh up by yourself.
When should your parents play a part?
Even if you are able to give consent yourself, it’s still a good idea to include your parents in your decision. If they know what is happening, they will be able to help you think through your decision and to support you better. That is why doctors, nurses and other people caring for you will encourage you to involve your parents. If you are close to other adults, such as your grandparents or an aunt, you might like to involve them too.
What if you don’t want your parents to know?
Sometimes young people want to be able to get advice or treatment, such as contraception, but may not want to tell their parents. If you are able to agree for yourself, the doctor or nurse will not tell them without your permission except in exceptional circumstances to protect you or
someone else from serious harm.
When can other people give consent for you?
If you’re under 18 and you find it too difficult to decide or you feel you don’t understand enough, other people can give consent on your behalf.
Usually this will be:
• your parents or guardian if you are living with them or being looked after by the local authority with the agreement of your parents;
• either your parents or your social worker if you are under a care order.
What if you don’t want to consent but your parents do?
The rules say that your parents may still decide that it is in your best interests to have a particular treatment, and give their consent on your behalf. This rule applies until you reach the age of 18. However, it is exceptional for a disagreement to get this far without being sorted out.
In very serious or complicated situations, a court can be asked to decide whether it is right for your doctor to go ahead with a particular treatment. This might happen, for example, if you and your parents disagreed over whether you should have a very serious operation.
So now we know.
Happy Easter!
The two documents I’ve referred to in this blog can be found at
http://www.patient.co.uk/doctor/Consent-to-Treatment-in-Children.htm
and
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4116903.pdf
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