Children in Genetic Research


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.

Key Concepts:

  • Genetic research includes investigation into how children's traits, anomalies, behaviour or disease might be influenced by genomics, or by epigenetics, how this knowledge can be applied and shared, and how interventions to detect, treat and prevent adverse genetic conditions can be developed.

  • Research ranges from the study of conditions associated with single genes in closed predictable systems, to multigenetic predispositions interacting with many environmental influences.

  • The differing influences of genes and environment and their complex overlapping and interactions are debated, particularly regarding behavioural conditions.

  • When exploring connections between genotypes and phenotypes (ways in which genes are expressed) researchers also need to know about children's social contexts.

  • There are risks that genetic researchers overstate the value and influence of their knowledge on health, and confuse giving information with providing therapy.

  • Children and adults tend not to accept advice to alter their life‐style significantly in order to reduce or prevent symptoms of a genetic condition.

  • Research about gene therapy incurs risks and has not yet provided tested or proven effective treatments.

  • Children should be involved in genetic research only if the findings are intended to benefit them and cannot be obtained from an older age group.

  • Economics crucially influences all stages of genetic research in the selection of topics, the funding and scale of projects, promotion of reports and implementation of findings.

  • Social justice requires that the groups of children who take part in research, including those in poorer countries, should also be able to benefit from the findings.

Keywords: children's rights; competence; confidentiality; consent; databanks; epigenetic


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Alderson, Priscilla(Mar 2012) Children in Genetic Research. In: eLS. John Wiley & Sons Ltd, Chichester. [doi: 10.1002/9780470015902.a0005176.pub2]