This policy document is part of a response submitted by the Progress Educational Trust (PET) to the Nuffield Council on Bioethics' Consultation on Human Bodies in Medicine and Research.

Is there a difference between making a decision on behalf of yourself and making a decision on behalf of somebody else: for example for your child, or for an adult who lacks the capacity to make the decision for themselves?

Wherever possible, it should be the case that people make decisions for themselves.

Where adults lack full capacity to make decisions for themselves, both the Mental Capacity Act 2005 and the Code of Practice issued by the Department for Constitutional Affairs to accompany the Act go into detail about how decision making can best be facilitated by others (see in particular Chapter 3 of the Code of Practice, 'How Should People Be Helped to Make Their Own Decisions?').

In the case of children who must make a decision, a Gillick competence test is preferable to automatically assigning decision making power to parents (see the UK's 1985 case Gillick v West Norfolk and Wisbech Area Health Authority). However, where children have not attained Gillick competence, it is appropriate that their legal parents should make decisions on their behalf.

By definition, no child consents to their own conception. This does not pose a problem, except in the case of 'saviour siblings' - children deliberately conceived in such a way that renewable tissue from their body (such as bone marrow) can be transplanted to a sibling afflicted with a severe disorder. Some have expressed concern that a child conceived with the express intention that they will donate bodily material to their sibling in this way cannot have consented to the arrangement.

We believe saviour siblings to be a special case where the lack of consent does not pose a significant problem. As explained in our answer to Question 22, we do not believe that the welfare of saviour siblings has been compromised by the circumstances of their conception.

That said, we think it is correct that saviour sibling arrangements are restricted to the donation of renewable tissue. The donation of non-renewable tissue, or of whole organs, is a far more problematic scenario that would indeed impact adversely upon the welfare of the child concerned.

The main problem with saviour sibling arrangements as they stand is not that they are unethical, but that parents are precluded from accessing such an arrangement because Primary Care Trusts often incorrectly categorise saviour siblings within their fertility budget. This is because the creation of a saviour sibling involves in vitro fertilisation, a process most commonly associated with fertility treatment. In this situation, however, it is not being used to address infertility. Nonetheless, parents wishing to conceive a saviour sibling are often unjustly subjected to the criteria that are used to ration fertility treatment, even though they are not infertile. If 'childlessness' is a prerequisite, then the parents automatically fail to access NHS-funded treatment.