CORE reflects on attending an open meeting of the HFEA, held on 1st December 2009 at the Barbican Centre in London.
In October 2009, the HFEA started its fundamental overhaul of the way in which Preimplantation Genetic Diagnosis (PGD) cases would be regulated in future. The Authority took the significant step of licensing the procedure on a condition-by-condition basis rather than the previous case by case approach. Theoretically this enabled any clinic in the UK already licensed for PGD testing to screen for any of the conditions approved by the Authority.
The decision was a controversial one. Opposition voices continued to express concern about the increasingly liberal construction of the meaning of a ‘serious condition’ (still a prerequisite for a licence) for the purposes of the Human Fertilisation and Embryology Act 2008. In 2007, for example, the Authority had already provoked intense criticism from the media for granting a licence for congenital fibrosis of the extraocular muscles (CFEOM), a form of eye squint. Heralded as the dawn of the ‘designer baby’, the decision signalled a policy shift away from the use of PGD exclusively for life-shortening diseases, such as cystic fibrosis, and towards its application for ‘cosmetic’ reasons.
Professor Gedis Grudzinskas, who was granted the original licence for CFEOM, remarked that we would increasingly see embryo screening being used for “severe cosmetic conditions”, and that he would apply to screen for any genetic factor at all that might cause a family severe distress. Provocatively citing hair colour as a potential factor for screening embryos, Grudzinskas claimed, “[Hair colour] can be a cause of bullying which can lead to suicide. With the agreement of the HFEA I would [screen for it].”
Key philosophers and scientists in the debate, conscious of the ominous ‘slippery slope’, fear that the inevitable conclusion of this sort of reasoning will be to justify screening for any trivial, aesthetic purpose. Commentators who question the willingness of fertility patients to undergo such expensive, invasive procedures underestimate the strong parallels to be drawn with today’s quest for perfection and the thriving cosmetic surgery industry.
For the time being, however, the focus is on disease rather than cosmetic enhancement and the breeding out of so-called undesirable traits presents an appealing prospect, if not imperative, in the on-going battle to alleviate human suffering. But as the interpretation of law in this area widens, to accommodate a growing consumer demand for perfection, the implications for individuals already possessing these genetic disorders are disturbing.
Disability rights groups resent the negative message PGD promotes, that being discarded before birth is infinitely preferable to being born with a disability. They assert that the procedure creates a sanctioned form of discrimination.
Moreover, concentrating efforts on preventing the birth of people with rare genetic disorders necessarily weakens the argument for directing time and money into finding viable cures and treatments for these conditions. This mentality can make affected individuals feel disenfranchised.
The issue becomes more problematic when contemplating later onset, lower penetrance conditions, which may not manifest themselves for many years, or indeed at all, after decades of healthy life. There may also be preventative surgery, early detection or treatment available for susceptible individuals.
In June 2006 the HFEA first granted permission to license later onset, lower penetrance conditions but still applying the case-by-case basis. See below for an explanation of some of the diseases involved.
In December 2009, the Authority further liberalised this stance, with a view to deregulating these procedures in the direction of condition-by-condition licensing as well.
As a token gesture towards public engagement, the Authority hosted a consultation on their decision, which was attended almost exclusively by representatives of the HFEA and clinical staff.
Dr. David King, from Human Genetics Alert (HGA), sitting on the panel, provided a solitary voice of ethical opposition to the move. King emphasised the variable nature of these conditions, and questioned whether they were sufficiently ‘serious’ to justify blanket regulation.
Taking the example of the BRCA1 gene, he explained that penetrance can range from 60% – 85% with variables such as a family’s genetic background and ethnicity significantly increasing or decreasing the risk. He further noted that the HFEA had historically only dealt with eight cases, of six different conditions, therefore rendering it too inexperienced to make any proper judgement as to whether inter-family variability was relevant to the question of seriousness of a condition.
CORE notes, moreover, that the Authority is often perceived as inappropriately cosy with the very IVF industry that it seeks to regulate. This was picked up in the recent Hampton Review, for example, which took a particularly critical view of the regulator’s proximity with clinicians. Case-by-case licensing will always be more likely to satisfy a legitimate public concern. Maintaining centralised decision-making in such a highly contentious area of PGD would ensure a greater measure of accountability, independence and consistency.
It was disappointing to find that these broader issues were bypassed during further discussions at the consultation, which focused primarily on the time delay which tighter regulation was putting on the procedure. As King acknowledged, this is not an argument for relaxing regulation, but rather for improving the efficiency of the HFEA. A reluctance to address the broader social and ethical implications of this newest form of PGD is an unfortunate but inevitable response from the Authority. The consultation’s conclusion seemed to be that cautious regulation equated to unnecessary bureaucracy. This counter-intuitive assertion takes no account of public anxieties about the permissibility of these techniques, the accountability of clinicians or the need for consistent decision-making.
We now await the Authority’s final policy on condition-by-condition licensing for late onset, low penetrance conditions, but do not anticipate any uncharacteristic prudence or sensibility from the HFEA.
*Pre-implantation Genetic Diagnosis (PGD) is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their children. It involves checking the genes of embryos created through IVF for this genetic condition.
Conditions currently screened for using PGD include Huntington’s Disease, Haemophilia and Cystic Fibrosis.