Alderson, Priscilla;
(2012)
Children in genetic research.
In:
The Encyclopedia of Life Sciences (eLS).
Wiley-Blackwell: Chichester UK.
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Abstract
Genetic research offers potential benefits and harms to children. Respect for children's individual and collective best interests, and for their human rights and worth and dignity includes keeping them informed, and involving competent children as much as possible in making decisions about genetic research that affects them. Their privacy and identity must be respected, as well as the consent or refusal of parents and of competent children. The article reviews the Declaration of Helsinki and other ethical guidance, as well as differing standards for research with children between Britain and the USA. The term ‘therapeutic research’ is critically analysed, and also questions of justice and who bears the burdens or enjoys the benefits of genetic research in richer and in poorer countries. Research with children about dominant and recessive, autosomal and sex-linked genetic conditions, about multigenetic predisposition meaning causally heterogeneous and often complex in origin, genomics and epigenetics, gene therapy and nature versus nurture, attention deficit hyperactivity disorder (ADHD) and economic influences is discussed.
| Type: | Book chapter |
|---|---|
| Title: | Children in genetic research |
| ISBN-13: | 9780470015902 |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1002/9780470015902.a0005176.pub2 |
| Publisher version: | https://doi.org/10.1002/9780470015902.a0005176.pub... |
| Language: | English |
| Additional information: | This version is the author-accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | ildren's rights competence confidentiality consent databanks epigenetic |
| UCL classification: | UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10007031 |
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