Well, these comments are against the backdrop of a very large body of literature and evidence highlighting being excluded from discussions in clinical care as well as in policy-making. In clinical care, it is many times very humiliating and distressing for young people to be excluded from discussions about their diagnosis and prognosis.

With children with various types of end-stage illnesses, there's legal recognition, through the mature minor doctrine, that they should be principle decision-makers in making decisions that sometimes would even result in their death, declining certain trials in terms of cancer treatment and other neurodegenerative, neuromuscular degenerative conditions. That's been very well documented.

There is an increasing view, and some of this really.... This is why I worked with Holland Bloorview in preparing evidence for the CCA panel that I worked on. Holland Bloorview has probably the longest-standing youth advisory council. They have, through their youth advisory council, programs for developing youth leadership. These are youth who are living with various forms of disability, and therefore can be quite sophisticated in demonstrating their insights on the implications of different types of treatments and policies. It is within the institutional mandate of Holland Bloorview to incorporate youth on various committees to weigh in on decisions on the ways in which policies are made.

The UN Convention on the Rights of the Child, article 12, highlights that young people should be heard and that their voices should be attributed due weight in matters that affect them. It's fairly wide scale.

Dr. Hanley, I'd like to maybe ride on one of your comments, on the recognition that decisional capacity is a relational phenomenon. One of the areas where I work as a clinical ethicist is in a child and youth mental health centre. It is very clear that the way in which we present information, the way in which we create a trustworthy, safe, relational environment, can bolster or thwart a young person's capacity to participate in decisions.

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