As we start the new decade, 2020, it provides an opportunity to reflect on the rapidly evolving fertility sector and the implications of this for fertility patients and families.
Sperm donor shortages
In the UK, around 2,500 men and women undergo donor conception treatment each year. Demand for donor sperm continues to grow, but the number of willing British sperm donors remains low and demand outstrips supply. As a result, the UK remains reliant on imported sperm, mainly from Denmark and the US, with 3,000 sperm samples shipped into the UK from Denmark in 2017 alone.
A national sperm bank was established in Birmingham in 2014 to boost British sperm donation. It received a grant of £77,000 but closed less than two years later, having recruited only 9 sperm donors.
This sperm donor shortage in the UK prompted publication of a medical study in January 2020 in the Journal of Medical Ethics, in which the authors asserted that men should be able to opt-in to donate their sperm for use after their death by strangers. They likened this to organ donation and argued this would increase donor sperm availability in the UK and alleviate suffering caused by infertility.
However, organ donation, sperm donation and posthumous conception are very different and they should not be conflated in this debate. They are governed by different law and policy and they produce unique outcomes. Organ donation improves or saves a life with the recipient’s consent and is governed by the Human Tissue Act 2004. Sperm donation creates an individual life and posthumous conception creates a much wanted child from a loved-one eggs or sperm, governed by the Human Fertilisation and Embryology Act 1990 (as amended). Each has its own character and identity, producing a different reproductive and biological legacy.
The sperm donor shortage in the UK is symptomatic of a growing fertility problem in the UK. Male fertility has halved in the western world in the last 50 years and the reasons for this decline are not fully understood. The UK is not sufficiently replacing its population and Brexit will bring this into sharper focus as we look to create a more autonomous future. As such, we need to do much more to raise awareness and understanding of the value and importance of individual fertility and the role and significance of British sperm donors. Individual fertility and family building are key components in the stability and future success of our society and law, policy and practice needs to take greater account of our growing reliance on assisted and donor conception.
Direct-to-consumer genetic tests
In January 2020, the HFEA released a statement warning about the unintended implications of direct-to-consumer genetic tests and the fact it can seriously disrupt family life. This is because these tests can unexpectedly reveal that an individual was donor conceived, creating shock, confusion and emotional turmoil outside the regulated donor conception framework that operates in the UK to support and protect donors, parents and donor conceived individuals.
Direct-to-consumer genetic tests can threaten and undermine donor anonymity and they carry serious implications in an adoption context too. If you undergo a direct-to-consumer genetic test it can reveal much more than insights into your own health, ancestry and links to close biological relatives. It also carries implications for your family and children too in the short, medium and longer term.
Many unanswered questions also remain about the implications and risks of sharing genetic information in combination with increasing public activity disclosing personal data on social media platforms and the ongoing digital, artificial intelligence and genomic revolutions. As such, there needs to be greater public awareness, understanding and better law, policy and regulation about the use and disclosure of personal genetic information.
IVF and ‘add-ons’
Following recent negative headlines about the cost and efficacy of IVF ‘add-on’ treatments in the UK, the Competition and Markets Authority (CMA) announced on 7 February 2020 that it is investigating concerns about possible mis-selling of IVF ‘add-on’ treatments and misrepresentation of success rates at UK fertility clinics. It will work closely with the Human Fertilisation and Embryology Authority (HFEA) to learn more about fertility patients’ experiences and about how clinics operate. It will also undertake a public consultation later this year and invites people to contact them to share their treatment experiences.
The CMA will produce written guidance (currently lacking in the UK) on consumer protection law for the IVF sector. It will produce guidance on price transparency so that clinics are clear and upfront about their fertility treatment prices to help patients make informed choices about the cost of treatment. It will make clear that patients should not be mis-sold IVF ‘add-on’ treatments, which can add up to an additional £2,500 per treatment cycle, and that they should be given all relevant information to help them decide whether an ‘add-on’ is right for them. It will also state that clinics should ensure their success rates are accurate and up to date on their websites and in their advertising.
If the CMA finds that fertility clinic’s practices are misleading or their terms are unfair, it could take enforcement action.
However, the fact remains that forty years after the advent of IVF there are no green HFEA traffic light ratings for “add-ons”, following the HFEA’s decision to downgrade its traffic light rating from amber to red for pre-implantation genetic screening of embryos in December 2019. IVF success rates remain fairly static and more evidence based research is required to fill the gaps in understanding and better inform the future delivery of fertility treatment for patients. We would also benefit from a new approach to research that encompasses digital, artificial and genomic advances to help widen our data analysis and understanding and improve delivery and outcomes across the fertility sector.
Fertility preservation: storage of eggs, sperm and embryos
Currently, there is an arbitrary 10-year limit for storing frozen eggs and sperm in the UK, except in cases that qualify for extended storage up to 55 years where a registered medical practitioner has given a written opinion that the egg or sperm provider, or the person to be treated, is prematurely infertile or is likely to become prematurely infertile (e.g. through cancer treatment or gender reassignment).
The arbitrary 10-year gamete storage period is inflexible and it does not allow enough time for modern family building. Increasingly, women and men are leaving it until later in life before starting a family for social and economic reasons. Furthermore, current storage limits disproportionately disadvantage women because their biological clock causes their fertility to diminish at a faster rate than men’s.
As such, the time has come to revisit current attitudes and time limits for storing eggs, sperm and embryos in the UK and review law and policy governing fertility preservation in the UK. I therefore welcome the government announcement on 11 February 2020 that it is launching a consultation into whether the limit should be extended in line with significant improvements in freezing technologies.
Fertility Law Reform
Although there is UK-wide statute governing fertility practices overseen by the HFEA, there is still significant variation in attitude, approach and delivery across the UK and a growing number of issues which need to be addressed.
The UK would benefit from a dedicated Ministry for Genomics and Fertility, with a Minister providing a unified voice, agenda and future direction for the fertility sector as a whole. This would help develop a robust fertility policy and political strategy encompassing pre-conception through to birth and future genetic legacy.
To help bring about law reform, the UK should also establish an expert advisory committee to look at rapidly evolving inter-connected digital, artificial intelligence, genomic, epigenetic and reproductive technological advances. This would help inform understanding, generate public debate and shape future fertility and wider law, policy and practice. You can read more here.
If you would like to discuss your situation or you require specialist fertility and family law advice and assistance please contact Louisa by email firstname.lastname@example.org or by telephone +44 (0)20 7965 8399.