First published on Today’s Family Lawyer on 10 November 2023.
2023 marks a milestone in the world of donor conception as it is the first year that donor conceived people have been able to access identifying information about their donor following the enactment of the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004. From 1 April 2005 all new donors had to agree to be identifiable. The information that will be given to the donor conceived child once they make the application to the HFEA when they turn 18 are the name and surname of the donor, their date of birth, town or district in which they were born and their last known postal address. The first cohort entitled to apply for identifying information about their donors turn 18 in 2023.
The HFEA has been running a “Who is my donor” campaign in order to raise awareness of the service it provides in Opening the Register. Information about how to access the Register can be found here.
In recent years, with the increasing popularity of direct-to-consumer DNA tests, the HFEA has been consulting on whether the law should change again. It is much easier for donor conceived people to discover their donors and donor siblings by signing up to DNA databases such as 23andme.com and Ancestry.com. Donors do not even need to be registered on the site to be located via ancestry tracing from those who are on the databases.
Last year Peter Thompson, Chief Executive of the HFEA, announced that the Authority was considering whether donor conceived people should be allowed to access the register before the age of 18, and a public consultation on fertility law reform followed.
We are expecting an announcement from the HFEA regarding its law reform proposals later this month. However, Natalie attended the annual conference of the British Infertility Counselling Association (BICA) in October 2023, at which Claire Ettinghausen, Direction of Strategy and Corporate Affairs at the HFEA, confirmed that the HFEA would be proposing a change in the law to allow parents of children conceived via donor conception to apply for identifying information about their child’s donor from birth. This would change the right to this information from the donor conceived person to their parents, which some may argue is wrong. However, others would counter that withholding this information from a donor conceived person until they are 18 is wrong and that they should be entitled to this information during their childhood, not only to access information such as medical history, but also to be able to benefit from a relationship with donor siblings during childhood. This is an exciting development in the law of donor conception, and we await with interest the announcement from the HFEA, which should also include law reform proposals in respect of patient safety, consent and scientific development.
The Law Commission of England and Wales and the Scottish Law Commission released their surrogacy law reform recommendations and a draft bill on 29 March 2023. You can read Natalie’s view on these proposals in this blog.
Maria Caulfield, Conservative MP for Lewes and Parliamentary Under-Secretary of State for Health and Social Care, said on 24 October during the IVF provision debate led by Kate Osborne, MP for Jarrow, that the Government was “in the process of responding to” the Law Commissions’ report.
The All-Party Parliamentary Group (APPG) on Surrogacy, chaired by Andrew Percy, Conservative and Unionist MP for Brigg and Goole and the Isle of Axholme, met in Parliament on 8 November 2023 to hear from the Scottish Law Commissioner Professor Gillian Black and a panel of people with lived experience of surrogacy, as well as APPG members, representatives from non-profit surrogacy organisations and lawyers and academics with experience in surrogacy.
During the meeting, Professor Black read out a letter from Maria Caulfield, received unexpectedly just hours earlier, giving the government’s interim response to the Law Commissions’ proposals. In that letter she said:
“There is a lot of detail to carefully consider, the Department of Health and Social Care are working with other key government departments to review the report’s recommendations to inform a full government response which we will publish in due course… While we appreciate the importance of the work, parliamentary time does not allow for the changes to be taken forward at the moment”.
Whilst that interim response was not unexpected, the silence from the attendees was deafening and indicative of the disappointment felt. We now know for certain that this government will not be considering surrogacy law reform until after the next general election (although their full response is still due by 29 March 2024, which is likely to be before the next election). It remains to be seen whether this or any subsequent government will have the appetite to tackle this issue.
The IVF provision debate in Parliament on 24 October was important for the LGBTQ community.
Maria Caulfield announced that a statutory instrument would be introduced to remove the discriminatory definition of partner donation. Currently, ‘partner donation’ is defined as the donation of reproductive cells between a man and a woman in an intimate physical relationship. This impacts lesbians who wish to create their family through reciprocal IVF (where one female partner gestates a pregnancy created using the egg of her female partner and donor sperm) as, even though they are in an intimate physical relationship, because they are two women and not a man and a woman, they have to undergo additional gamete screening, which heterosexual couples do not have to undergo. This comes with an additional cost for same-sex couples and is, therefore, discriminatory. With this definition being updated, these additional screening tests will not be required.
The removal of this discriminatory definition will also improve access to fertility treatment for those living with HIV who have an undetectable viral load. Whilst it is currently permissible for opposite sex couples to access fertility treatment where one or both are HIV+, this is because they are treated as ‘partners’ within the above definition. HIV+ gay men wishing to create their families through surrogacy or HIV+ lesbian couples wishing to create their families through reciprocal IVF are not able to do so because they are treated as donors, and it is illegal for anyone who is HIV+ to donate their gametes.
During the debate, Maria Caulfield announced that the Government would be introducing secondary legislation to allow the donation of gametes by people with HIV who have an undetectable viral load. She said that this would be introduced “as soon as we can”, although no further timeframe was given.
It is widely acknowledged within the scientific and medical communities that undetectable equals untransmissible, meaning that where a person’s viral load is undetectable, they cannot pass on the virus. The scientific advice from the Advisory Committee on the Safety of Blood, Tissue and Organs (SaBTO) was updated to confirm this, and we have been waiting for the Government to announce that the law relating to access to fertility treatment for those with undetectable viral loads will be changed. The announcement from Maria Caulfield is, therefore, hugely welcome to the LGBTQ community and it is hoped that secondary legislation will be introduced as soon as possible.
Maria Caulfield also announced that the Government would be implementing a policy that no form of self-financing or self-arranged insemination is to be required for same-sex couples before they can access fertility treatment on the NHS. Currently, same-sex female couples are required to self-fund up to 12 rounds of IUI (intrauterine insemination) before they are eligible for fertility treatment on the NHS. This can cost lesbian couples upwards of £35,000 and is described as a “gay tax” as heterosexual couples do not need to self-fund IUI before being able to access IVF treatment on the NHS (instead they must have been trying naturally for two years before being eligible, subject to other eligibility criteria). She acknowledged that “this is taking a little while to be rolled out across the country” but described it as a “priority”.
We are all aware of the NHS “postcode lottery” and Maria Caulfield confirmed in her speech that NICE (National Institute for Health and Care Excellence) would be reviewing its fertility guidelines next year and that the Government would be working with NHS England to implement those guidelines “quickly and fairly” to end “regional variation and create a compassionate and consistent fertility service across England”. The current NICE guidelines require Clinical Commissioning Groups (CCGs), now Integrated Care Boards (ICBs) to offer three full IVF cycles to women under 40 years of age who have not conceived after two years of regular unprotected sex or 12 cycles of artificial insemination (where six or more are by IUI). A “full cycle” is defined as one episode of ovarian stimulation and the transfer or any resultant fresh and frozen embryos. According to research carried out by Progress Educational Trust, only 50% of GPs knew that under the current NICE guidelines three full IVF cycles should be offered to women under 40, while only 16% of GPs correctly identified the completion of an IVF cycle. The current NICE guidelines have been in existence for 10 years (Clinical Guidance [CG156] was published on 20 February 2013) and are not currently followed by all ICBs. One wonders how the Government will require ICBs to follow the new NICE guidelines next year when they have failed spectacularly over the last 10 years, but we can only hope.
For those interested in the debate where these announcements were made, you can watch it here and read it here.
An often-controversial area of IVF is treatment “add-ons” – optional treatments that clinics may offer in addition to IVF and IUI, but which come with a price-tag. The issue with the add-ons is that there is often limited evidence as to their effectiveness in increasing the chances of a live birth. The HFEA recently updated its rating system in order to provide guidance to patients as to their effectiveness, enabling them to make informed decisions. More information can be found on the HFEA website.
The World Health Organization (WHO) defines infertility as “a disease of the male or female reproductive system defined by the failure to achieve a pregnancy after 12 months or more of regular unprotected sexual intercourse”. The NHS defines infertility as “when a couple cannot get pregnant (conceive) despite having regular unprotected sex”. These definitions fail to consider the fertility issues faced by the LGBTQ+ community who, no matter how hard or how long they try to become pregnant in a same-sex couple, would not qualify as infertile under this definition. The same applies for single people. This discriminatory definition can, therefore, have significant repercussions for same-sex and single people wanting to access fertility treatment, particularly when relying on insurance.
The WHO definition was also adopted by the American Society for Reproductive Medicine (ASRM). However, during its recent conference in New Orleans in October 2023, the ASRM published an updated definition of infertility as “a disease, condition, or status characterized by any of the following:
This is a major step forward in recognising the importance of access to fertility treatment for all. It is hoped that the WHO and NHS definitions will also be updated so that they are similarly inclusive of LGBTQ and single people.
In recent months we’ve seen changes to the international surrogacy landscape which are not only impacting intended parents in those jurisdictions but can also impact British Intended Parents (IPs) wishing to pursue surrogacy abroad.
Legislation was passed in Russia in December 2022 banning foreigners from using a Russian surrogate. Only married Russian citizens or single infertile Russian women can access surrogacy in Russia following a change in the law.
In June 2023 it was announced that surrogacy in Georgia would be banned for international IPs. The change will come into effect from 1 January 2024. From then only Georgian citizens will be able to access surrogacy in Georgia.
In July 2023 the Italian government approved a bill that will criminalise Italians from going abroad to have children via surrogacy. Surrogacy has been illegal in Italy since 2004 and so many Italian intended parents go abroad to create their families. The bill is not yet law as it requires approval in the Italian senate. Punishment is a fine of up to €1m and a two-year prison sentence.
Some Italian cities are also now removing the names of non-biological lesbian mothers from their children’s birth certificates under new legislation passed by far-right Prime Minister Giorgia Meloni. 27 women in Padua who had created their families through artificial insemination abroad and then registered their children under the city’s centre-left government in 2017 have been impacted by the removal of the non-biological mother from their child’s birth certificate. The Meloni government has ordered local authorities to stop registering the children of same-sex parents with both their names. Only biological parents can be named on birth certificates. Padua was the first city to retroactively cancel birth certificates, with Milan, Florence and Rome following suit.
In August 2023 eight members of staff of Crete’s Mediterranean Fertility Institute were arrested, charged with running an illegal commercial surrogacy operation including human trafficking, breach of the assisted reproduction legislation, forgery, falsification of medical data and fraud. Altruistic gestational surrogacy with a preconception court order is permitted in Greece, but commercial surrogacy is illegal.
In August 2023 it was reported that the first womb transplant had been successfully performed in the UK. The procedure was sponsored and funded by the charity Womb Transplant UK following approval from the Human Tissue Authority. The recipient was a woman who was born without a womb and the donor was her sister. The transplant was a success, and the recipient is due to undergo an embryo transfer at the Lister Fertility Clinic.
The world’s first successful womb transplant took place in Gothenburg in Sweden in 2013, and globally 50 babies have been born so far following approximately 100 womb transplants. Womb transplants are not available on the NHS and any further transplants will be funded by Womb Transplant UK. They have approval for 10 operations, five with brain-dead donors and five with living donors.
This is great news for women with Mayer-Rokitansky-Kuster-Hauser syndrome (MRKH) where they are born with an underdeveloped vagina and underdeveloped or missing uterus, who may be able to benefit from this procedure in the future.
Artificial wombs could also be part of our reproductive future. The US Food and Drug Administration (FDA) met in September 2023 to discuss human trials of artificial wombs which have so far only been tested on animals. The hope is that artificial wombs will be able to keep extremely premature babies alive.
Looking even further into the future, in vitro gametogenesis (IVG), could change the way we think of parenthood. IVG is where egg and sperm cells are created from other cells in the body. This would be revolutionary as gay couples would be able to create embryos that are biologically related to both of them, while single people would also be able to reproduce without needing donor gametes. Whilst this technology is many years away, it would be an exciting and ethically complex development.
