By Laura O’Donovan and Sacha Waxman
Criticism of the disparities in the public provision of fertility treatment in England is nothing new. The so-called ‘IVF postcode lottery’ emerged due to widespread divergence in local commissioning policies restricting access to treatment services. Unfairness in that process results not only from the different amounts of treatment available in different areas, but also from the imposition of restrictive non-clinical criteria designed to further ‘ration’ the services that are available.
On August 9th, the Sunday Times and Daily Mail reported that women in 24 NHS regions are being barred from accessing funding for IVF unless they can prove that they are in a “stable” relationship. The articles followed a report published by the British Pregnancy Advisory Service (BPAS) identifying a number of additional access criteria imposed on patients in different areas of the country. The extent of this variation in fertility commissioning policies brings into sharp focus the inherent unfairness of the current funding system. As a non-specialised service, local Clinical Commissioning Groups (CCGs), and not NHS England, are responsible for funding fertility treatment (excluding pre-implantation genetic diagnosis). Accordingly, the various inconsistencies in policies nationwide are a direct result of the statutory powers given to CCGs to regulate the provision of, and access to, different medical treatments depending on the needs of local populations and relative budget constraints.
BPAS correctly suggests that the problem of inequality in regulating access to fertility treatment is systemic. We take that further still and contend that it is consequent to a regressive funding system which is grounded in bias. As such, we argue that until the current mechanism of funding is unequivocally reformed, with nationalised and mandatory guidance provided, all the CCG policies regulating access to treatment must be subject to wider scrutiny in order to ensure they are ethically justified, fair and transparent. These are the basic foundations of responsible regulation. Building on the concerns highlighted by BPAS and the media, we consider that a more in-depth analysis of two specific issues in particular is warranted: the use of prerequisite child welfare considerations as a justification for additional rationing criteria; and the exclusionary policy position on the use of third-party gametes.
The disingenuous expansion of the welfare of the child requirement
Child welfare considerations play a powerful role in the way that access to human assisted reproductive technologies (ARTs) is regulated in the UK. Contained in section 13(5) of the Human Fertilisation and Embryology Act 1990 (as amended), the preconception welfare principle (PCWP) requires clinics providing licensed fertility services to consider the welfare of future individuals before conception. As such, this provision is very different from a consideration of an existing child’s welfare in healthcare or child law. Notwithstanding that child welfare is not paramount in the regulation of ARTs (as it is in child law relating to children after birth, for example), it has unrivalled and problematic strength in the current regulatory model that focuses on a theoretical child and prospective parents. Of the 135 CCG policy documents included in the BPAS Report, a large number make specific reference to ‘child welfare’ and/or include other justificatory reasons why a CCG can refuse access to state funded fertility treatment. Criticism can be levelled against this divergent and reductionist approach on multiple levels, most of which are outside of the scope of this piece. But what is abundantly clear, even on a cursory examination of the CCGs policy documents, is a lack of consistency and transparency in the public policy position.
In brief, the policy documents include a range of factors such as the stability of a relationship, mandated residential cohabitation, parental smoking, recreational drug use, evidence of financial interdependence in a relationship and other factors capable of causing physical, psychological or medical harm. All of which, although not explicitly stated, are inextricably and disingenuously linked to ‘welfare’ considerations. But – crucially – by distinguishing pre- and post-conception welfare considerations, a fundamental question is raised: how are child welfare considerations being used by CCGs in order to ration access to fertility treatment services? And do the restrictions represent an unjustified intrusion into the reproductive freedoms of the would-be parents? In short, our answer to the latter is a resounding – yes.
Genetic kinship as the only ‘appropriate’ outcome of fertility treatment?
A number of CCGs across England (for example, Blackburn with Darwen, Blackpool, Fylde and Wyre, East Lancashire and Greater Preston) have adopted a policy on the use of gamete donation in fertility treatment that refuses funding for treatment requiring both donor eggs and donor sperm. The reason cited for this exclusionary approach is that the relevant CCGs ‘intend that the benefit of assisted conception to the patient is from achieving parental status in respect of a child to whom the patient has made a genetic contribution’. Decisions in cases requiring third party reproduction are said to ‘rely on the Principle of Appropriateness and also on the CCG’s position in relation to third party involvement which is within scope of the Principle of Ethics [sic]’. Exactly what these undefined ‘principles’ mean and how the creation of an embryo entirely from third-party gametes is contrary to them remains unexplained and ambiguous.
The crux of this particular issue is the fact that genetic kinship as the primary goal in fertility treatment is both assumed to be how families are, and how they should be. However, promoting genetic relatedness (between the child and the individual patient, or the child and at least one of the parties to a couple) as the only ‘appropriate’ goal of assisted conception services is problematic. Indeed, it has serious potential to ‘other’ and invalidate the lived experiences of donor-conceived families created through double gamete donation or donor embryos. As such, given the lack of clarity, transparency and contextual sensitivity in this particular policy position and the potential for discrimination it raises, it is highly questionable whether these policies are defensible.
Ultimately, scratch below the surface of these challenges and it transpires that framing the issue as ‘a postcode lottery’ is, quite frankly, putting it very politely.
Authors: Laura O’Donovan1 and Sacha Waxman2
Affiliations: 1 Department of Politics, Philosophy and Religion, Lancaster University, 2 School of Law and Social Justice, University of Liverpool
Competing interests: None declared
Social media: @lauraaodonovan @SachaRWaxman