New Zealand genetic testing law review supports saviour siblings

A report by the Human Genome Research Project at Otago University commissioned by the New Zealand Law Foundation examines the issue of genetic testing and recommends that the laws, which currently allow testing in very limited situations, should be relaxed to allow its use for wider medical benefit, including the creation of saviour siblings - a situation where a couple undergo IVF and genetic testing to select an embryo that will be a donor match for an existing child who often requires blood or bone marrow in order to survive. Finding a matching donor from even a global pool of non-related donors can be extremely rare and often saviour sibling technology is used as a desperate last resort.

Currently New Zealand allows saviour siblings only when the existing child suffers from a familial genetic disorder and requires a transfusion of umbilical cord blood from its saviour sibling. The report supports an extension of regulations to allow saviour siblings for all serious or life-threatening illnesses involving not just blood but also tissues such as bone marrow, so long as it can be reasonably safeguarded to not harm or usurp the autonomy of the saviour sibling through the appointment of an independent guardian or advocate.

The 950-page, two-volume report goes beyond saviour siblings and attempts to comprehensively 'provide legal and ethical frameworks' to establish a socially responsible regulatory system that would also be widely permissive of the application of genetic testing to individuals, newborns, embryos and communities, explained Project Leader and Dean of Law Mark Henaghan,. The researchers conclude that the benefits of genetic testing outweigh the harms. Also, it discusses that awareness and registration of genetic test results help doctors to understand genetic disease within communities better and assist with genetic linkage studies.

However, the report found that serious misperception and unawareness of these benefits exist within the public and also the medical community itself, where many members began practicing before genetics existed as a developed science.

Henaghan warns that, 'The word 'genetic' is a bit like the word 'nuclear'. People are quite scared of it', and the lack of awareness and appreciation for genetic testing could cause misunderstanding that hinders informed consent and leads to misuse.

Foundation Chairman, James Johnston, felt that the report is an important step towards devising a legal system that can cope with the challenges of gene biotechnology. Work has already begun on the next report which focuses on gene patenting, genetic privacy and pharmacogenetics - the use of genetics to test and provide personalised medication.