What are the key international policy positions addressing the participation of children in genetic research?
• The Universal Declaration on Bioethics and Human Rights (UNESCO, 2005) provides specific guidelines for the involvement of ‘persons without the capacity to consent’, such as children. It addresses issues of consent, assent and the assessment of risks and benefits. • The 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing (European Commission, 2004) requires that children’s interests be considered prior to participation in research and outlines some specific considerations. • The Declaration of Helsinki (WMA, updated 2004) also contains provisions to protect ‘legally incompetent’ persons such as children, and addresses issues of consent, assent and the assessment of risks and benefits. • The International Ethical Guidelines for Biomedical Research Involving Human Subjects (CIOMS, 2002) provides specific guidelines for the involvement of children in research.
• The Universal Declaration on Bioethics and Human Rights (UNESCO, 2005) provides specific guidelines for the involvement of ‘persons without the capacity to consent’, such as children. It addresses issues of consent, assent and the assessment of risks and benefits. • The 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing (European Commission, 2004) requires that children’s interests be considered prior to participation in research and outlines some specific considerations. • The Declaration of Helsinki (WMA, 2008) also contains provisions to protect ‘legally incompetent’ persons such as children, and addresses issues of consent, assent and the assessment of risks and benefits. • The International Ethical Guidelines for Biomedical Research Involving Human Subjects (CIOMS, 2002) provides specific guidelines for the involvement of children in research. These guidelines provide criteria that must be met for child inclusion in research and address the issue