Alderson, P; Hawthorne, J; Killen, M; (2005) The participation rights of premature babies. International Journal of Children's Rights , 13 (1) pp. 31-50. 10.1163/1571818054545231.

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Abstract

This paper reviews the relevance of the UN, 1989 Convention on the Rights of the Child (UNCRC), and particularly the so-called participation rights, to premature babies and their care. The review is illustrated with examples drawn from a study of four neonatal intensive care units, NICU. The paper begins with the background on human and children’s rights, on research about childhood, babies and participation, and on the neonatal research study. Participation rights include rights to: life and survival; a name, identity and nationality; contact with the baby’s family; respect for the child’s cultural background, and inherent human dignity; the child’s right to express views freely in all matters affecting the child, the views to be given due weight according to the age and ability of the child; the opportunity to be heard during proceedings that affect the child; freedom of expression and information, of thought, conscience and religion, of association and peaceful assembly, rest and leisure, play, and to participate freely in cultural life and the arts; disabled children should enjoy a full and decent life and active participation in the community with the fullest possible social inclusion. The paper concludes that respect for babies’ participation rights is feasible, immediate, integral and indispensable to adequate neonatal care, and that babies’ rights justify and validate high standards of neonatal care.

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