Choosing Genes for Future Children: Regulating PGD, is the first major report from the three-year multidisciplinary project which draws together a team of New Zealand and international researchers in Law, Bioethics, Science, Maori and Paediatrics to examine whether, how and to what extent, human genome-based technologies should be regulated. PGD became publicly funded by the New Zealand Government this year.
The report analyses three major ethical objections to the use of PGD - the destruction of embryo, 'playing God' and concerns about eugenics. In addressing these concerns the report settles on a gradualist approach to the human embryo, in that the embryo is more than a mere collection of cells but less than a full person. It finds that modern medicine intervenes in human life in many areas to avoid agonies being suffered by people. In the same way, PGD can be used to avail the intractable and unbearable suffering brought about by serious incurable genetic disorders. Eugenics is generally associated with state-enforced programmes that impose a genetic blueprint. PGD is used by a small number of intending parents exercising individual choices to avoid serious, incurable genetic disorders in their families. The New Zealand Organisation for Rare Disorders is open to the use of PGD.
Effort was made in the report to address Maori (the indigenous people of New Zealand) values and beliefs surrounding the use of PGD technology, with in-depth interviews with a range of Maori participants. While no single Maori view emerged on the potential risks and benefits of PGD, we did see strong patterns emerge. General agreement was found from Maori perspectives that PGD has the potential to do more good than harm for Maori communities. As one Maori participant in the study said:
'If there is the power to change it, would you? If you knew that your child was going to have a terminal disease that would kill them by the age of two or three and be in absolute pain and agony for that two or three years. If I had had that choice, I wouldn't want to see anybody go through that pain, child or not'. The main concern was that Maori may not have equality of access to PGD.
The report raises questions about the current controls on the use of PGD. Currently, PGD is an 'established procedure' in New Zealand with guidelines dictating its use. 'Serious impairment' is the basis for the general use of PGD which would include late onset conditions such as breast cancer which can be identified at the preimplantation stage. Non-medical sex selection is banned outright and the report questions whether this is too rigid a stance given that public and other attitudes can shift rapidly. The report found no evidence that sex selection for social reasons would do any great harm in New Zealand. Firstly the procedure itself is complicated and requires a great deal of dedication by parents before using it for the purposes of sex selection. Second there is no evidence that one particular sex would be predominantly chosen to create an imbalance. In the end the report recommends that the outright ban on sex selection be removed and that for a start sex selection would be considered on a case-by-case basis.
The report also highlights inconsistencies in the current regulation of PGD. An example of this is the way the selection of embryos for a genetic impairment seen in a parent is prohibited. For example, deaf parents may not select an embryo that carries the genetic mutation that encodes for deafness, even when the parents consider that deafness is not an 'impairment' but rather a disorder that can be life-enhancing. Such a prohibition may also present difficulties for parents where there is limited or a lack of suitable embryos for implantation. These examples are inconsistent with prenatal testing where parents can choose to continue with a pregnancy even though they have been made aware of a genetic impairment in a fetus.
These inconsistencies also extend to so-called 'saviour siblings' - where a child with a severe life-threatening condition can be saved if a sibling is born with compatible genetic tissue. PGD can be used to test for compatibility but only when the sick child has a familial genetic disorder - one which has been passed from parent to child. If the condition is non-heritable then PGD cannot be used. This anomaly could be addressed by a allowing the use of PGD to create a 'saviour sibling' in cases where the child is suffering from a severe life-threatening condition whether familial or not.
The report overall finds the current uses of PGD do more good than harm. We do recommend that a system be put in place to monitor the health and social outcomes of the ongoing use of PGD. The New Zealand Law Foundation-funded Human Genome Research Project will now broaden its work to examine questions about genetics and society, involving whole genome screening technology and genetic testing of newborns and children.
Sources and References
Choosing the Genes for Future Children Regulating Preimplantation genetic diagnosis