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Genes, Society and the Future, Volume II, Part Four: Genetic Testing of Children Who Cannot Give Valid Consent


Deborah Lawson


Faculty of Law, University of Otago

Mark Henaghan


University of Otago; University of Otago

October 24, 2007

GENES, SOCIETY AND THE FUTURE, Vol. 2, Part 4, Human Genome Research Project, Dunedin, NZ, 2007

Abstract:     
Abstract for all parts of Volume II: Genetic testing raises new issues from those involved in other medical contexts, particularly for children. Most of the concerns relevant to minors are prompted by the familial and predictive aspects of genetic information.

It is vital that GPs and other health professionals know more about genetic testing and genetics services in New Zealand, so that they can better facilitate informed consent; recognise and acknowledge any limitations in their expertise, particularly as they will influence their patients when discussing testing possibilities; know when to refer patients for genetic testing; and can offer some degree of genetic counselling, if required.

Genetic testing of children who lack capacity to consent to genetic testing for non-medical reasons should be treated with caution. Many adults choose not to discover their own genetic risk status and the threat to the child’s autonomy and right to confidentiality are the reasons for this caution. Also, where there is a lack of evidence about what the test results may signify for the child’s health, this uncertainty is best dealt with by waiting until the child is able to make personal choices.

A register should be established to facilitate disclosure to persons who have reached the age of sixteen or eighteen years (or earlier if they are competent and personally seek access to the information) of the fact that they underwent genetic testing as children. Initially, the minors may be informed either that they underwent predictive or carrier testing as children, or that some information is available about genetic risk status should they wish to access it.

Such a register is the appropriate method for ensuring that people who undergo testing as children are informed of the fact for the following reasons. Firstly, it would encourage parents and health professionals to disclose test results to children – as the fact of testing will be disclosed to them anyway. Secondly, it gives the person tested a choice regarding whether or not to access the information (assuming that he or she has not already been told). Thirdly, it avoids the difficulties of imposing a new disclosure duty that may have unwieldy and undesirable consequences in terms of monitoring, enforcement and sanctions.

Genetic counselling would be required to assist minors in deciding whether to access their test results, and to support them whatever their choice. The privacy of the register and its information must be strictly maintained.

Number of Pages in PDF File: 36

Keywords: Law, Genetics, Ethics, Human Genome, Genes, Testing, Minors, Children

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Date posted: May 3, 2011  

Suggested Citation

Lawson, Deborah and Henaghan, Mark, Genes, Society and the Future, Volume II, Part Four: Genetic Testing of Children Who Cannot Give Valid Consent (October 24, 2007). GENES, SOCIETY AND THE FUTURE, Vol. 2, Part 4, Human Genome Research Project, Dunedin, NZ, 2007 . Available at SSRN: http://ssrn.com/abstract=1828479

Contact Information

Deborah Lawson
Faculty of Law, University of Otago ( email )
PO Box 56
Dunedin North
Dunedin, 9016
New Zealand
6434795324 (Phone)
6434798855 (Fax)
HOME PAGE: http://otago.ac.nz/law/genome
Mark Henaghan (Contact Author)
University of Otago ( email )
Faculty of Law
P.O. Box 56
Dunedin, 9054
New Zealand
64 3 479 5324 (Phone)
64 3 479 8855 (Fax)
HOME PAGE: http://otago.ac.nz/law/genome
University of Otago ( email )
PO Box 56
Dunedin North
Dunedin, 9016
New Zealand
6434798854 (Phone)
644798855 (Fax)
HOME PAGE: http://otago.ac.nz/law/genome
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