Reconsenting paediatric research participants for use of identifying data
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Murdoch et al. give an excellent account of the law in Canada relating to consent to research in children when they mature. Laws must be based on moral principles, which always have a beneficial intention and are everywhere similar for both treatment and research, for both adults and children and for the publication of identifying data.
A competent adult can accept,reject or discontinue treatment. But a doctor must only provide treatment, which is beneficial physically or emotionally. In a publicly funded service she may need to balance the benefit to the individual against the needs of the community. The .patient is always free to consult a different doctor. A patient's personal details must not be revealed without express permission.
An adult can also accept, reject or stop participation in research intended to benefit others. Again he must not be identified without permission. He cannot require the eradication of data obtained because that would harm others.
A guardian, on behalf of a child, consents to treatment or research with the same rights and restrictions. As far as possible the informed consent of the child should be obtained.. When the child reaches maturity he must be fully informed and assumes responsibility for his own care. He can discontinue beneficial treatment but cannot demand that the doctor reverses it, because that would require her to cause harm. He can change doctors. He can stop participation in research but he cannot hav...Show More