Legal certainty on assisted reproduction needed
Opinion: The prospect of having more than two genetic parents is looming
‘In 20 to 40 years, at least in the developed world, most babies could be conceived through in-vitro fertilisation, so that their parents can choose among embryos,” according to Prof Hank Greely of Stanford Law School and director of the university’s Centre for Law and the Biosciences. This quote is from an article by Michael Specter, “The gene factory” in the January 6th edition of the New Yorker .
Specter describes the remarkable phenomenon of the Beijing Genomics Institute (BGI), the world’s largest genetic research centre ,which is based in the port city of Shenzhen, in southern China. He examines whether genomic data will play a central role in the reproductive policy of a state in a manner akin to China’s one-child policy, which dates back 35 years.
What is right and what should be regulated? Information about what is happening in assisted human reproduction (AHR) in Ireland emanates only from media stories and through websites for private clinics.
An Oireachtas joint committee has set the end of February as the closing date for receipt of submissions on the heads of the Children and Family Relationships Bill. This Bill was mentioned to the Supreme Court recently during the appeal hearing about whether a genetic mother had a right to be registered as the mother of a child born to her sister under a surrogacy arrangement. The introduction of the Bill is indeed welcome as the plight of children and their parents urgently needs to be addressed.
Commissioning parents, surrogates, donors and practitioners in Ireland all deserve legal certainty in relation to their obligations and rights. The new legislation should encourage such stakeholders to remain in Ireland for AHR and surrogacy arrangements, having the legislative support of the State.
Apart from providing for the duties and rights of donors of eggs or sperm, surrogates, commissioning parents and, most importantly, children, there is also an imperative to ensure standards for the provision of AHR and surrogacy arrangements may be reviewed and enforced. It was only in 2006 and 2007 that then minister for health and children introduced regulations setting standards in respect of quality and safety for the donation and processing of human tissues and cells in AHR and other areas. These were required to be implemented by European directives and the Irish Medicines Board (IMB) was appointed the competent authority.
There is no other legislative remit for the IMB to regulate activities within the AHR sector or to publish verified records of AHR services.
We should be able to assess trends and demands in AHR. Children have joined Irish families over the past 30 years arising from donated genetic material and through surrogacy arrangements. The number of the children involved is unknown because many donations and surrogacy arrangements are made outside Ireland. Observers can rely only on details produced by Irish clinics providing AHR or by way of media coverage.
Reverting to the possibilities offered by genomic data, it is worth noting that one of BGI’s genomics projects is to sift through the DNA of people with IQs higher than 150. Stephen Hsu, a theoretical physicist and mathematician at Michigan State University, told Specter: “We are getting to the point where we are going to be able to make statistical predictions based on the genomic information about complex traits.” He posed the rhetorical question: “Wouldn’t it be amazing if there were certain tweaks you could make in utero that would enhance the performance of our brain?”
In addition, a research article in Cell published in January 2012 indicated that cells had been contributed successfully to embryos before implantation, during a study of a generation of chimeric rhesus monkeys. Therefore, it is conceivable that cells could at some stage come from donors other than the original sperm or egg donors. The prospect of having more than two genetic parents is looming.
The report of the Commission on Assisted Human Reproduction, published in 2005, mentioned uses for pre-implantation genetic diagnosis (PGD). It recommended (with one dissenting view) that it should be allowed and that developments in PGD should be regulated, overseen and monitored.
Access to information
In that context, data about the use and application of AHR and surrogacy in Ireland should be gathered for evaluation and discussion. In the UK the Human Fertilisation Embryology Authority publishes statistics and details from audited records of licensed clinics. It also advises about the extent of licences given to clinics within its jurisdiction. In Ireland, however, the remit of the IMB is confined to the regulation of AHR under the regulations on human tissue and cells. It does not have a specific duty to collate and publish information for the public on AHR.
Medical practitioners may be guided by general guidelines of the Medical Council but the public is left to fend for itself for information. The IMB or another authority should collate and share data to inform behaviour and policy. Access to information in Ireland ought to encourage commissioning parents to use AHR and donations in Ireland.
This will allow genetic details to be readily accessible after children are born. Although the Government cannot legislate for information about services in other parts of the world, it can encourage practices in Ireland.
Tony O’Connor is a senior counsel