Consent and looked-after children
The Society’s Ethics Committee have hosted a discussion meeting on the tricky ethics of carrying out research involving looked-after children. Law Professor Jean McHale (Birmingham Law School) began the discussion with a talk on some of the legal difficulties around consent in this type of research.
Professor McHale said that consent from a legal perspective was a complex issue. For example, parental responsibility for some looked-after children can be vested in a local authority as well as a child’s parents or guardians. In addition, the legal issues surrounding children and consent draw on many different areas of English law. Researchers may be liable in criminal or civil law if consent is not given. Failure to obtain consent may also lead to infringements of the Human Rights Act 1998. The question of capacity to consent is derived from family law. In relation to persons over 16, the test for capacity today is to be found in the Mental Capacity Act 2005 .
The situation is even more problematic as there is no single statute regulating research in this country. The Health Research Authority has been placed under a statutory basis by the Care Act 2014 and there are various degrees of regulation in relation to specific areas such as clinical trials concerning medicinal products, yet considerable regulatory uncertainties remain.
Medical sociologist Professor Helen Roberts (University College London) shared her experience of ethics in relation to research with looked-after children drawing both on her current work and her work as former Head of R&D at Barnardos – one of the few non-medical charities to have had a substantial R&D function. She described her practice colleagues as being ‘better than the best’ in terms of their commitment to ensuring the right services. However, she said, at the time, there was little research into the long-term outcomes. The notion of setting up trials (for instance) to assess novel services was largely seen in a negative light both in academic social work and in the services themselves. ‘The notion that we often simply don’t know what is the right thing to do is one that we all find difficult. What had more traction with colleagues was when we spoke of a more robust evaluative approach within a children’s rights framework – that it’s part of a child’s and parent’s right to know whether what’s being offered is more likely to do harm than good.’
Roberts and her colleagues are currently doing a small study in one authority looking into care leavers’ transitions in health, education and social care. She outlined some of the ethical concerns raised by colleagues. One was whether the study was intrusive, involving as it does speaking to what were seen as vulnerable young people at a stressful time. Roberts said that this raised the tension between a child’s or a young person’s right to participation and their right to protection. She added that since all social research has the potential to be intrusive, seeing a particular group as too vulnerable to participate carried its own ethical dilemmas.
Other issues Roberts and her colleagues encountered were concerns around confidentiality. Roberts said that as part of the consent process, the young people were told that if they gave us cause for concern about their safety or someone else’s, we would need to share it. One young person challenged this, feeling that since s/he was no longer ‘looked after’, this felt heavy-handed.
Roberts concluded: ‘How can we arrive at a position that provides a level of protection but also allows an ethical and rigorous research to take place?’
Professor Pasco Fearon (UCL), who has been working with children receiving social care and third-sector services in a range of settings, said he had encountered multiple problems with gaining consent. One of the difficulties was that although children themselves found the idea of being involved with research very exciting, many professionals working with these children felt anxious and protective of them and would – through the best of intentions – block opportunities for children to get involved. Fearon suggested that professionals can sometimes lose sight of the fact that it might be interesting and empowering for service users to take part in research and to have a voice in that way.
His recent work involves gathering evidence for a new family intervention for foster families; however, Professor Fearon and his colleagues have encountered issues with gaining consent for these children. He said that parental responsibility for many children in care is often shared between the local authority and the child’s parents, even when there is limited contact, as it is often legally simpler to keep parental responsibility as shared. This often means that consent is required from three or even four parties (foster carers, the local authority, and one or both parents) – in addition, of course, to the assent of the child.
Professor Fearon said that biological parents can have complicated feelings about these issues and sometimes have a difficult and complex relationship with the local authority. Also making contact with these parents can often be very difficult for researchers, or that contact may be potentially de-stabilising of the child’s care, when there has been no contact for some time. He asked whether this was a line that should never be crossed: ‘When we have done our due diligence trying to contact biological parents, is there any scenario where not obtaining consent from parents would be permissible? Or do we have to accept that a child in this position would not be able to participate in the research?’ He raised the possibility that this could be viewed as allowing children who are already vulnerable to become disenfranchised, at a double-disadvantage. He added that these sorts of difficulties are part of the reason why there are very few well-executed trials involving fostered or local authority children. This is a major problem for the field.
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