Recent Posts

by Dr Jess Buxton

The Progress Educational Trust (PET), in partnership with the Scottish Government, brought together a group of experts to cut through the hype and jargon and explain the latest developments in genetics/genomics in the context of assisted conception...RCOG and HFEA voice concerns over NHS gynaecology waiting times (progress.org.uk)

PET director, Sarah Norcross, chairing, began by highlighting the general need for more information about developments in this fast-moving area of science. Last year, PET commissioned a survey of the UK public to measure people's understanding of, and attitudes towards, areas of science and medicine including genetics and genomics. In the subsequent report 'Fertility, Genomics and Embryo Research: Public Attitudes and Understanding', 33 percent of respondents chose the option 'don't know' when asked to describe the term 'human genome'.

The first speaker was Dr Jonathan Berg, consultant clinical geneticist at NHS Tayside and clinical senior lecturer at the University of Dundee. He explained that the human genome contains around three billion DNA base-pairs. If each of these were a single letter, then this 'book' of our genetic information would be equivalent to around 6000 copies of Tolstoy's 'War and Peace'. Identifying the single genetic variant that causes a genetic condition can be challenging, and he stressed the importance of knowing where to look – and of knowing what is being tested for before a test is arranged.

Dr Berg described some examples of monogenic conditions that can potentially be detected in the embryo using preimplantation genetic testing (PGT-M, previously known as preimplantation genetic diagnosis), as the specific genes involved are known. These include achondroplasia, cystic fibrosis and Duchenne muscular dystrophy (DMD) (a full list of the conditions for which the use of PGT-M is currently approved in the UK is available here).

Not all genetic variants are inherited from a parent: 'de novo' variants are novel genetic changes that appear for the first time in the egg cell, sperm or early embryo. Variants of this type are responsible for over 40 percent of previously undiagnosed cases of severe development delay. Dr Berg said that although prenatal genetic testing is just becoming available in the UK for such cases, PGT-M is not available unless there is a family history of the condition being tested for.

Dr Nicola Williams, consultant clinical scientist at NHS National Services Scotland's Strategic Network for Genomic Medicine, then gave a talk on PGT provision in Scotland. She started by explaining how cells are removed from the embryo in order to carry out a genetic test. The preferred time to carry out this embryo biopsy is on day five, when the embryo is at the blastocyst stage and several cells can be removed. She went on to describe the difference between PGT-M for monogenic conditions and PGT-SR, which can be used to detect chromosome structural rearrangements.

Dr Williams explained that when PGT-M is performed, genetic markers are currently used to identify the 'high-risk' chromosome that carries the gene variant responsible for the condition. This approach requires testing other family members, including grandparents if possible. She showed the results for a PGT-M test carried out for a condition with an autosomal dominant inheritance pattern, in which half of the six embryos tested were identified as 'high-risk' and the other three were 'low-risk'. Dr Williams said there is now a move towards using whole-genome sequencing (WGS) when testing for monogenic conditions, which would identify the genetic variant directly.

The next speaker was Professor Zosia Miedzybrodzka, director of the University of Aberdeen's Centre for Genome-Enabled Biology and Medicine and service clinical director of genetics at NHS Grampian. Her talk focused on carrier screening for genetic conditions, which can identify unaffected carriers of autosomal recessive genetic conditions, either antenatally or pre-conception. She explained that in the UK, such testing is only carried out routinely for the inherited blood disorders sickle cell disease and thalassaemia. Additional carrier testing is carried out in sperm and egg donors, for example for cystic fibrosis and chromosome structural rearrangements.

Professor Miedzybrodzka went on to discuss expanded carrier testing, a commercial service in which many more genetic conditions are tested for (typically 400 or more). She stressed that this approach wouldn't detect de novo genetic variants, chromosomal disorders, or non-genetic conditions.

This approach also raises broader questions about what to screen for. What counts as serious? Should adult-onset disorders be tested, as well as those present from childhood? And what if donors find out they have a condition of which they were not previously aware?

Professor Miedzybrodzka also highlighted the challenges of interpreting genomic information and implementing the findings, areas currently affected by a skills shortage. She gave the example of a DMD gene variant identified in a fetus, which was wrongly classified as harmful. The same variant was discovered in two healthy brothers in the same family. Given these problems of delivery, implementation and effectiveness, she explained, expanded carrier testing is not currently part of NHS services.

The final speaker was Dr Francesca Forzano, a consultant in clinical genetics at Guy's Hospital, and honorary senior lecturer at King's College London. She is also chair of the Public and Professional Policy Committee of the European Society of Human Genetics, and lead author of this Committee's statement on the use of polygenic risk scores (PRSs) in PGT (see BioNews 1130 and 1137). Her talk covered the potential use of PRSs in embryos to assess the likelihood of common diseases or traits in adulthood.

Dr Forzano outlined the limitations of PRSs, which are constructed by testing hundreds of variants associated with risk of a common, complex disease. However, such conditions are the result of interactions between genetic predisposition, environmental factors and lifestyle choices – and a PRS will only capture part of the genetic component.

Another issues with PRSs highlighted by Dr Forzano is that a relative rather than an absolute risk is calculated. For example, a PRS for schizophrenia could identify a subset of the population who have 50 percent less risk, however this would still be an overall risk of 0.5 percent compared to one percent. Furthermore, most genetic variants associated with common disorders have been identified in European populations, so may be inaccurate in people of non-European descent.

In addition to these limitations, a PRS could be affected by variants with opposite or multiple associations, and would be confounded by the presence of a single genetic variant that greatly affected risk. Dr Forzano concluded that the clinical utility of PRS remains to be demonstrated, and they are certainly not yet validated for use in relation to embryos. She cautioned that PGT for polygenic risk (PGT-P) is not a diagnostic or a screening test, and no guidelines or best practice have been established.

A wide-ranging audience Q&A session followed the presentations, which included a discussion of controversies surrounding PGT for aneuploidy (PGT-A, previously known as PGS), which is not currently available via the NHS, and the fact that PRSs have potential applications that go beyond disease and risk. Speakers also signposted reliable sources for those seeking further information on the topics covered: PET, the HFEA, and the patient support organisations Unique and Genetic Alliance UK.

Ana Vasconcelos

Fewer than one in 20 men who applied to become sperm donors in the USA and Denmark in 2018 and 2019, were accepted by a sperm bank, a recent study has shown.

The number of sperm-donor-conceived children born in the UK has tripled in the past 13 years in the UK, meaning demand for sperm donors outstrips supply. Recent figures from the Human Fertilisation and Embryology Authority show half of donor sperm used in the UK is imported, often from Denmark (see BioNews 1170). In a study published in Human Reproduction of over 11,000 men who applied to be sperm donors to the sperm and egg bank Cryos in the USA and Denmark, researchers looked at the points in the application process men dropped out or were rejected by the clinic. They also looked at the impact of being asked to waive anonymity on willingness to donate and acceptance.

Lead author – and Progress Educational Trust (PET) trustee – Professor Allan Pacey from the University of Sheffield, pointed out that although sperm donors can choose to retain their anonymity in the USA and Denmark (though not the UK since 2006), over a quarter of donors shifted from an initial decision to remain anonymous, to be identifiable, over the course of the donation process. He said: 'What's particularly fascinating is that more donors, who initially wanted to remain anonymous, were willing to be identifiable as the screening and donation process continued. This is particularly good news for patients in the UK undergoing fertility treatment, as it is a legal requirement for sperm donors to be identifiable to any children born from their donations.'

Around half of applicants dropped out or were rejected before being invited to provide a sperm sample, for the second stage of the application process, researchers found. Of the men who provided a sample 21 percent did not have a high enough quality semen, according to the clinic. Of men accepted after semen analysis and invited to complete a medical questionnaire, just 18 percent continued to the next stage.

A report published by PET in June 2022 Fertility, Genomics and Embryo Research: Public Attitudes and Understanding showed that 64 percent of the UK public would consider sperm or egg donation with identity release (see BioNews 1148).

Professor Pacey said: 'In the UK you can only become a donor if you agreed to be identifiable and there simply aren't enough guys in the UK that are willing to do that, or we haven't managed to tempt them enough, because we haven't got an advertising system that targets them.'

He went on: 'The study with Cryos highlights how hard it is to become a sperm donor. It's not like blood donation where once it's done you can have a cup of tea and go home. Sperm donation is a regular commitment with lots of screening and regular testing as well as life-long implications for the donor if any children are born from their sample.'

Gene activity and protein loca

by Ana Vasconcelos

Fewer than one in 20 men who applied to become sperm donors in the USA and Denmark in 2018 and 2019, were accepted by a sperm bank, a recent study has shown.

The number of sperm-donor-conceived children born in the UK has tripled in the past 13 years in the UK, meaning demand for sperm donors outstrips supply. Recent figures from the Human Fertilisation and Embryology Authority show half of donor sperm used in the UK is imported, often from Denmark (see BioNews 1170). In a study published in Human Reproduction of over 11,000 men who applied to be sperm donors to the sperm and egg bank Cryos in the USA and Denmark, researchers looked at the points in the application process men dropped out or were rejected by the clinic. They also looked at the impact of being asked to waive anonymity on willingness to donate and acceptance.

Lead author – and Progress Educational Trust (PET) trustee – Professor Allan Pacey from the University of Sheffield, pointed out that although sperm donors can choose to retain their anonymity in the USA and Denmark (though not the UK since 2006), over a quarter of donors shifted from an initial decision to remain anonymous, to be identifiable, over the course of the donation process. He said: 'What's particularly fascinating is that more donors, who initially wanted to remain anonymous, were willing to be identifiable as the screening and donation process continued. This is particularly good news for patients in the UK undergoing fertility treatment, as it is a legal requirement for sperm donors to be identifiable to any children born from their donations.'

Around half of applicants dropped out or were rejected before being invited to provide a sperm sample, for the second stage of the application process, researchers found. Of the men who provided a sample 21 percent did not have a high enough quality semen, according to the clinic. Of men accepted after semen analysis and invited to complete a medical questionnaire, just 18 percent continued to the next stage.

A report published by PET in June 2022 Fertility, Genomics and Embryo Research: Public Attitudes and Understanding showed that 64 percent of the UK public would consider sperm or egg donation with identity release (see BioNews 1148).

Professor Pacey said: 'In the UK you can only become a donor if you agreed to be identifiable and there simply aren't enough guys in the UK that are willing to do that, or we haven't managed to tempt them enough, because we haven't got an advertising system that targets them.'

He went on: 'The study with Cryos highlights how hard it is to become a sperm donor. It's not like blood donation where once it's done you can have a cup of tea and go home. Sperm donation is a regular commitment with lots of screening and regular testing as well as life-long implications for the donor if any children are born from their sample.'

Gene activity and protein loca

Support, including implications, for males and their partners either individually or together is available in all licenced clinics via specialist fertility counsellors. As the documentary implied - GET TALKING.

BBC3 9-00pm 12-01-23 9-00pm
Excellent programme highlighting Male fertility issues
Try i player - definitely worth a watch

by Dr Antony Starza-Allen

When life takes an unexpected turn, people undergoing fertility treatment can be confronted with difficult decisions about the use and storage of gametes or embryos – sometimes decisions they made (or did not make) many years previously.

Introducing the Progress Educational Trust (PET)'s event, 'Till Death Do Us Part: Embryos and Gametes after Death Divorce or Separation', PET's director Sarah Norcross highlighted the uncomfortable (but thankfully rare) situations in which some people undergoing fertility treatment find themselves.

Recent research commissioned by PET and carried out by Ipsos showed public support for the posthumous use of sperm or eggs for conception, by a partner or family member of the deceased. But complex questions remain. What is the status of material in storage? Who gets to decide what is done with it? In what circumstances is posthumous use permitted? This debate explored the complex legal, medical, and practical considerations if people who have sperm, eggs or embryos in storage separate from their partner, or if they die.

First to speak was Robert Gilmour, a family lawyer at SKO Family Law Specialists in Edinburgh, who discussed the legal implications of relationship breakdown for couples undergoing fertility treatment before the point at which a pregnancy is established. When disputes arise relating to stored gametes or embryos, the law looks to the parties' consent, he explained, and relationship status is not relevant.

The Human Fertilisation and Embryology Act 1990 does not view the couple as a unit but rather as individuals, each of whom must give consent, and where each party is entitled to withdraw or vary that consent. Not only does this presents practical considerations for clinics (who must take consent from patients), it also leads to numerous variations in use of gametes or embryos for which specific consent is required.

In terms of Scottish divorce law, stored gametes and embryos are not viewed as property (see Holdich v Lothian Health Board) so the court cannot direct who should own them, although Gilmour pointed out that a court could require one party to pay storage fees. He finished by saying that this leaves a legal gap when a couple has embryos created from donor eggs and donor sperm, where neither can withdraw consent, but since the embryos are not viewed as property they cannot be legally divided or allocated in the event of separation.

Next to speak was Professor Abha Maheshwari, lead clinician at Fertility Scotland. Professor Maheshwari outlined the requirement for additional consents and screening for those who would like the option for their gametes or embryos to be used in surrogacy if they should die. She explained that if someone dies before any required screening is due, then the gametes cannot be used posthumously by anyone except their partner. In cases where the surviving partner is male or cannot otherwise carry the pregnancy, that means the gametes cannot, in practice, be used.

Those undergoing treatment must therefore plan carefully in advance. However, screening incurs significant additional costs, which healthy couples may not wish to commit to given the remote possibility of premature death.

The next speaker, James Lawford Davies, partner in Hill Dickinson's health team, discussed a range of important legal decisions from the Diane Blood case (see BioNews 924) to the recent Jennings v Human Fertilisation and Embryology Authority decision (see BioNews 1146). All these cases turned on the issue of consent, where the courts have had to consider whether the posthumous use of gametes or embryos could be permitted in circumstances where formal consent requirements may not have been met.

In some cases, in the absence of the correct forms being filled in, parties were unable to persuade the court of their intention to use reproductive material in the requested manner. In other cases, there was sufficient evidence to permit the court to infer consent to give effect to the wishes of the deceased. These decisions demonstrate that in the absence of consent, a decision can only be made on a case-by-case basis by the court. As Lawford Davies illustrated, there may be circumstances in which the court can give effect to the wishes of the deceased, but in the absence of a court order,the position remains that there must be consent in place.

A busy question-and-answer session followed the presentations. Asked whether recent additions to consent forms are 'overkill' in relation to something that is not likely to happen, Professor Maheshwari explained that while consent forms could be made more explicit, they operate in the interests of transparency and give patients choice. It is better to be honest and transparent with information given to the patient, she said. Similarly, Lawford Davies took the view that the emphasis should be on communication between the clinic and patients about the forms, rather than the forms themselves. The new forms might be an improvement in some respects, but there always remains the potential for patients to not read them properly, he said.

The speakers were also asked if they would recommend a cooling off period, or arbitration, or conflict resolution when couples who have created embryos together split up. Lawford Davies said clinics should encourage the couple to resolve their issues, rather than getting involved in their client's personal dispute. He said that some clinics have found that couples have reconciled during a cooling-off period. Gilmour was also supportive of a cooling-off period, if couples cannot agree on what should happen to embryos before making irrevocable decisions.

Finally, the speakers were asked whether the use of stored gametes or embryos by the deceased's parents is ever appropriate. For Lawford Davies, the answer is fact and case-specific and shouldn't detract from the relevance of the wishes of the parties. Similarly, Professor Maheshwari said all possibilities should be looked at, while Gilmour said there can be circumstances where it is appropriate, but those circumstances would need to be looked at very carefully.

This discussion illustrated how the application of bright-line rules around consent is extremely fact-sensitive and varied. Achieving the right balance and just results involves not only encouraging those undertaking fertility treatment to plan for such eventualities, but also requires clinics to ensure that patients are fully informed about all aspects of treatment, including life's unexpected eventualities.

Practical and legal considerations aside, Lawford Davies highlighted that all cases discussed involved brave, strong people faced with tragedy and unexpected suffering and who wanted to fulfil the wishes of a loved one who had died. Amid the bureaucracy of consent, it is worth remembering this.

by Dr Kirsty Horsey

The first session of the Progress Educational Trust (PET)'s 2022 Annual Conference 'Breaking Down Barriers: Who Will Lead the Way?' featured three eminent speakers working at the heart of fertility health policy, both nationally and internationally.

First to speak was Professor Dame Lesley Regan, professor of obstetrics and gynaecology at Imperial College London. Her talk, 'A Women's Health Agenda: Redressing the Balance' focused on the recently launched Women's Health Strategy for England and several related reports published in the past few years. Collectively, these 'shine a light on taboo subjects in women's health' and issues that 'really trouble women' – including access to fertility diagnoses and treatment. In working on these reports, she said, she had been 'struck by how ignorant many people were about problems women have trying to access care'.

She reflected on how the issues brought up in one report 'Better for Women' published by the Royal College of Obstetricians and Gynaecologists (RCOG) in December 2019 were later brought up again in 'A Women's Health Agenda: Redressing the Balance'. Professor Regan said that in her current role as Women's Health Ambassador, she will draw upon this work to encourage the UK Government to look again at IVF funding. According to Professor Regan, this should include provision of good quality information at all stages of the reproductive lifespan, including in schools, and wellbeing services promoting good health rather than relying on reactive measures suggesting proactive healthcare versus disease intervention.

Apart from highlighting continuing disparities for women seeking and accessing healthcare, Professor Regan told the audience that she has come to realise that if you seek change, this must be achieved by small incremental steps and you must be prepared to move things on slowly. Despite the fact she thought she had 'painted a rather gloomy picture', she was optimistic about the future and said she would hold the Government's 'feet to the fire'. She hoped that if she were asked to speak at a future event, she would be able to report on improvements and that 'the fertility side of the Women's Health Strategy would be becoming a reality'.

Dr Gitau Mburu, a scientist at the World Health Organisation (WHO)'s department of sexual and reproductive health and research, then spoke to the topic 'Achieving Universal Access to Fertility Care: A Global Perspective from the WHO'. He outlined how infertility and subfertility amount to a significant global burden and explained how this – plus disparities in provision and availability in relation to geography, GDP and other factors – have a negative impact on overall health, as well as gender equality. As part of the global health agenda, Dr Mburu also explained that responses to infertility are central to achieving sustainable development goals.

The WHO has created substantial resources and strategies over decades, most recently starting to develop guidelines on the prevention, diagnosis and treatment of infertility. While more than eight million babies conceived via IVF have been born worldwide, and we are now seeing the benefits of significant technological advances and greater availability of treatments, better awareness is needed of the confluence of advanced maternal/paternal age, fertility preservation needs, longer-term freezing, and a growing repertoire of experimental add-ons to existing interventions.

There are also implications for gender, reproduction and choice, safety, regulation, legal and equity of access issues related to fertility care, he said. The WHO's 2019 Global Health Policy Survey found that many countries have inadequate policy guidance on fertility care, coupled with differences in financial support (and therefore access) and regulation, which differs significantly even in the minority of countries where laws are in place. Additionally, there is a lack of fertility education and awareness, and an accompanying lack of access to good information.

Dr Mburu said that a comprehensive range of actions are needed to achieve universal access to fertility care. These include ensuring infertility features in national guidelines and policies on sexual/reproductive health, a comprehensive approach to fertility education and awareness to 'reach the unreached', and increased health system investments in fertility care on both the 'demand' (patients) and 'supply' (providers) sides. He ended by reminding us that fertility care is part of the right to health and a fundamental part of human rights and human dignity. Barriers still exist, he said, which must be addressed through national and international jurisprudence and operationalisation of already existing international commitments.

Finally in the session, we heard from Julia Chain, chair of the Human Fertilisation and Embryology Authority (HFEA). Beginning her talk 'The HFEA: Working to Improve Access and Outcomes for All', she explained that upon beginning her role in April 2021, she was 'optimistic and ambitious that the HFEA could help reduce inequalities in access to and outcomes in fertility treatment' and that the law could be modernised to reflect modern medical practice, social changes and expectations. Linking back to Professor Regan, she added that while she remains optimistic, it is 'a little frustrating that real change always takes longer than one expects'.

Chain explained that by law all licensed treatments and outcomes must be reported to the HFEA. Its register is the largest of its kind and, she said, has been used in recent years to 'shine a light on some of the inequalities we know exist', including geographical discrepancies in provision, differences related to relationship status or family type, and the fact that people from ethnic minority backgrounds have lower success rates following fertility treatments, with black patients having the lowest chances of success. Such inequalities extend further, she explained, pointing out that ethnic background also affects access to sperm and egg donation and the availability of donated gametes, as highlighted in a report published earlier this month.

To help rebalance these inequalities, Chain said there were key areas the HFEA wants to see addressed. First, there must be good access to information about both fertility and infertility. This should include the 'creation of new information flows to support and engage GPs, practice nurses and patients and the promotion of fertility education materials to support people, ideally before they become "patients"'. Because GPs are the first port of call for many people needing treatment, access to appointments, GP education and information are crucial. White patients are more likely to speak to a GP sooner when trying and failing to conceive. This may contribute to inequalities in outcomes that we already know about, don't yet fully understand, but must take steps to address.

Second, Chain said that although outside the HFEA's remit, fertility funding – including significant differences in regional NHS funding for IVF – must be addressed. Long NHS waiting lists affect couples' chances, as many are forced to delay starting treatment. Additionally, the likelihood of funding reduces with age, and there is a serious lack of funding for same-sex female couples and single women. Linked to funding, the cost-of-living crisis will impact those who are planning or wish to undertake fertility treatment. Third, she highlighted changes to family structures and the increasing number of treatments provided outside the typical 'patient with a male partner' model, including increasing numbers in female same-sex relationships, or patients with no partner. Issues such as 'shared motherhood' and the use of gametes from HIV+ patients raise particular issues for which legal solutions are being sought (see BioNews 1155).

Finally, Chain explained that changes to the Human Fertilisation and Embryology Act, the legislation governing the provision of licensed fertility treatment across the UK, are still intended. While the HFEA had hoped to consult on this by now, 'wider political turmoil' has caused this to be delayed until 2023. Returning to optimism, Chain said that she is 'determined to get proposals before parliament at the earliest opportunity possible'. Of course, she added, the HFEA can't do this alone, and works with other organisations in the fertility sector – including the British Fertility Society, the RCOG and Fertility Network – on how to reduce inequalities. The HFEA looks forward to working closely with Professor Regan on related aspects within the Women's Health Strategy.

Some lively questions from the audience followed the presentations, where all speakers were drawn back to common themes. All viewed education about fertility and infertility as key, across the board. This extends to related areas in, but not limited to, women's health - including menstrual healthcare, diagnosis and treatment of pelvic pain, and even abortion.

Getting the information out is key, and while there is obviously a role for health professionals and educators in doing this, there is also a need to communicate with younger people in modern ways (such as via TikTok). All speakers were also united on the need for collection and dissemination of good quality data, as this helps to identify where inequalities are, both nationally and globally. Finally, the need to keep up with changing social and cultural norms was highlighted as important, both across the globe and at home.

PET would like to thank the sponsors of this session (the Edwards and Steptoe Research Trust Fund) and the other sponsors of its conference (the Anne McLaren Memorial Trust Fund, ESHRE, Vitrolife, Born Donor Bank, CooperSurgical, Ferring Pharmaceuticals, Merck, Theramex, TMRW Life Sciences and the Institute of Medical Ethics).

Register now for PET's free-to-attend online events in 2023:

Your Guide to Genetics and Genomics in the Fertility Clinic (18 January 2023)
100 Years of Daedalus: The Birth of Assisted Reproductive Technology (1 February 2023)
Understanding Miscarriage: Pregnancy Loss after Fertility Treatment (15 February 2023)
When to Stop Storage: Improving Conversations About Unused Embryos (1 March 2023)
Flying the Flag for Fairness: How Do Countries Compare?
by Dr Eleanor Taylor

Professor Carlos Calhaz-Jorge, chair of the European Society of Human Reproduction and Embryology (ESHRE), was the session chair for the second session of the Progress Educational Trust (PET)'s 2022 annual conference.

The first presentation was 'Turkey: Restricted Access to Assisted Reproduction' by Dr Mete Işıkoğlu, gynaecologist at the Gelecek Centre for Human Reproduction in Turkey. Dr Işıkoğlu explained how the reproductive medicine sector in Turkey has expanded over the past thirty years since the first fertility clinic opened in 1988. Following the introduction of state funding for some forms of fertility treatment in 2005, the number of clinics has grown exponentially. However, this funding is restricted to married heterosexual couples.

Assisted reproduction as defined within Turkish legislation, includes any treatment in which a woman's egg is fertilised by her husband's sperm, and stipulates that any embryos created outside the body can only be transferred to the relevant woman's womb. All forms of third-party reproduction, such as gamete donation, embryo donation or surrogacy, are strictly prohibited. Further legislation introduced in 2010 states that anyone travelling outside of Turkey to access third-party reproductive treatment, and anyone who facilitates such cross-border treatment, will be 'reported to the state prosecutor'.

While this legislation restricts access to fertility treatment for many people within Turkey, Dr Işıkoğlu explained that it does not necessarily reflect the views of the general public within the country. One recent study suggests that only 15 percent of the population strongly objected to egg donation, for example.

Dr Işıkoğlu hoped that in the future, Turkish legislation would adapt to permit third-party reproduction, and also that the state would fund more forms of fertility treatment (such as egg freezing). He explained that funding needs to cover the full cost of treatment, because wages in Turkey are low compared to the cost of IVF and other treatments, making these treatments unaffordable for many.

In the second talk of the session Dr Diane De Neubourg, head of Antwerp University Hospital's Centre for Reproductive Medicine, shared her experience of working as a reproductive medicine specialist in her talk 'Belgium: Liberal Access to Assisted Reproduction'.

Perhaps the most impressive aspect of the Belgian fertility sector is the high level of government funding available to Belgian citizens who require treatment: they can access 90 percent funding for up to six IVF cycles, with patients paying the remaining cost – approximately €400 per cycle. This funding is available to women up to age 43.

Dr De Neubourg explained that this funding was introduced when the Belgian government recognised the medical and financial challenges that multiple pregnancies bring. Hoping that by providing a financial incentive for patients to have a single embryo transfer, it would be possible to reduce the number of multiple births and associated complications, the government agreed to cover 90 percent of the treatment costs on the condition that the fertility clinics would halve the rate of multiple births.

This deal seems to have been very successful, as the multiple birth rate from fertility treatment is now consistently less than ten percent in Belgium and the cumulative live birth rate from treatment is high. Interestingly, despite the offer of six funded cycles, Dr De Neubourg reported that there was a high dropout rate from treatment. Indeed, more than a quarter of patients do not return for a second IVF cycle if their first cycle is unsuccessful, which perhaps suggests that even if you remove a significant proportion of the financial burden of treatment from patients, the emotional and psychological burden should not be underestimated.

The third talk was entitled 'Germany: Restrictions on Egg Donation' and was presented by Dr Andreas Tandler-Schneider, gynaecologist at the Fertility Centre Berlin. Despite Germany and Belgium being neighbouring countries, the regulation and funding of fertility treatment in these two countries is vastly different. Fertility specialists in Germany are required to adhere to the 1990 Embryo Protection Act, which – as the name suggests – was designed to protect the status of the embryo, rather than to maximise safety for the patient or resulting child(ren).

The Embryo Protection Act creates a number of obstacles for fertility specialists. Any clinician who 'attempts to fertilise more egg cells from a woman than may be transferred to her womb within one treatment cycle' may face up to three years' imprisonment. German fertility specialists have had to find creative ways of performing treatment cycles to comply with the Act – or at least, work within a 'grey area of the law' – without significantly compromising success rates. Impacts on clinical practice include reluctance to grow many embryos to the blastocyst stage, and apprehension around freezing surplus blastocyst-stage embryos. As a result, there is a high multiple birth rate, as two embryos are transferred in more than half of the treatment cycles performed in Germany.

Interestingly, while sperm donation is permitted in Germany, egg donation is strictly prohibited and – again – is punishable by imprisonment. As a result, many patients travel abroad to access treatment with donor eggs. Dr Tandler-Schneider highlighted some of the risks involved, such as high travel costs, language barriers, the use of anonymous donors, and questionable practices such as transferring three or more embryos at a time.

The final talk was entitled 'Italy: Where Liberal Access Meets Practical Difficulties' and was presented by Dr Giulia Scaravelli, director of the Italian National Assisted Reproductive Technology Register. Despite the use of the word 'Liberal' in Dr Scaravelli's title, fertility treatment in Italy is limited to heterosexual couples. Treatment is not permitted for same-sex couples or single women, while surrogacy and egg donation are also strictly prohibited.

Both Dr Scaravelli and Dr Tandler-Schneider described funding and legislation issues that are very familiar to those that work in the UK fertility sector. Patients in Germany and Italy face a 'postcode lottery', just as English patients do when trying to access state funding for fertility treatment.

Discussions of UK law during other sessions of the conference were echoed here, by the panellists' frustrations at slow-moving governments when trying to initiate change at a legislative level. The laws that currently govern the use of fertility treatment in these European countries arguably no longer reflect the social, political and religious views of the public, but there does not seem to be a fast or efficient way of modernising the legislation to remedy this.

Overall, these four talks made me appreciate that fertility treatment in the UK is accessible to a diverse range of people regardless of their marital status, sexual orientation or gender identity. However, patients here could benefit from more generous state funding like that offered by Belgium, and from government policies that appreciate the long-term benefits of funding for fertility treatment.

2023

This report has come at an important time. Regulations passed in 2005 have given most donor-conceived people the right to access identifiable information about their donor when they turn 18.

There are around 200 donor-conceived people who are turning 18 in 2023 and who will be eligible to apply for identifying information about their donor for the first time. However, it is impossible to predict just how many will apply and who will then try to make contact with their donor.

Opening the Donor Conceived Register is another time stamp in the history of egg, sperm and embryo donation. Fertility is a specialty that never stands still. It will be fascinating to see how patients, family formations and other aspects of donation highlighted in this report, evolve further in another 30 years' time.

You can find out more about the rise of donation, the availability of donors, their changing characteristics and how family formations have evolved in the HFEA's Trends in Egg, Sperm & Embryo donation report.

Information is key when thinking about or going through fertility treatment. The HFEA supports patients by providing free, clear, and impartial information about fertility treatment, clinics and egg, sperm and embryo donation. Find out more at www.hfea.gov.uk.

A sign of a specialty that never stands still
by Julia Chain

The speed at which fertility treatment has evolved over the last 30 years is nothing short of incredible. The rapid scientific and technological advancements achieved in this time has given the 620,000 patients who have had IVF or donor insemination, much-longed-for hope, that one day they will conceive a child of their own.

In 2023, the landscape of egg and sperm donation will change as the first cohort of donor-conceived people affected by the 2005 change to donor anonymity law, will be eligible to access identifying information about their donor. This, along with an analysis of donor treatment numbers, of donor registrations and their changing characteristics, is highlighted in the new Trends in Egg, Sperm and Embryo Donation report, published by the Human Fertilisation & Embryology Authority (HFEA).

The report has shown the dramatic increase in children born through egg, sperm and embryo donation over time. The number of children born with the help of a donor has nearly doubled since the 1990s with over 4100 children born in 2019 compared to around 2500 in 1993. Over 70,000 donor-conceived children have been born since 1991 and egg, sperm and embryo donation accounts for one in 170 of all births and for one in six births using IVF in the UK.

The largest proportion of births are from treatments using donor sperm, followed by egg donation. Births from treatments using donor embryos are least common but have increased from under 50 births in 2010 to over 200 births in 2019.

The number of children born from donor sperm has more than tripled over the last 15 years, from under 900 in 2006, and growing to over 2800 in 2019. This increase is largely due to female same-sex and single people having treatment.

'Offer of hope'

In addition to the change in family type with more single parents and same-sex couples having children, we know that donation can dramatically increase an older patient's chance of success. As birth rates decline with age when women use their own eggs, older women can increase their chances of having a baby by using donor eggs. In 2018/19, the birth rate per embryo transferred for patients aged 18-34 using their own eggs was 33 percent, compared to below five percent for patients aged 43-50. However, birth rates remained above 30 percent for all ages when donor eggs were used; a statistic that means we must question how many older patients are being encouraged to have treatment with their own eggs, when using donor eggs may provide a much higher chance of success. We recognise that this is a very complex and emotionally charged issue.

Disparities

The HFEA's Trends in Egg, Sperm and Embryo Donation report shows that IVF treatments using donated sperm or eggs are less commonly funded through the NHS. From 2016-2020, just 13 percent of donor treatments were funded by the NHS compared to around 40 percent of IVF treatments without donation.

We know that same-sex couples are increasingly using donor IVF treatment and they often can't access NHS funding unless they've had at least six rounds of unsuccessful intra-uterine insemination (IUI). The government published its long-awaited Women's Health Strategy this year which committed to putting a stop to this requirement (see BioNews 1152). This is a really important commitment, and we are engaging with the Department for Health and Social Care about this regularly.

We also know that in recent years sperm imported into the UK has increased; sperm from mixed, other and black ethnicity donors were more likely to be imported than sperm from Asian and white donors.

The availability of donor sperm or eggs depends where in the UK you live and so it is possible that the increase in imported donors is in response to a lack of ethnically diverse donors available in the UK, or a result of patient choice, as well as long waits in some areas. In response to our National Patient Survey 2021, 82 percent of patients who had used donor eggs, sperm or embryos said it was important that the donor's ethnicity matched their own. However, some ethnic minority patients found it difficult to find donors matching their ethnicity.

This shortage of sperm from men from certain ethnic minority backgrounds could relate in part to cultural and/or religious beliefs, as well as stigma around donation in these communities. It could also be due to general lack of awareness around donation in these specific areas.

2023

The speed at which fertility treatment has evolved over the last 30 years is nothing short of incredible. The rapid scientific and technological advancements achieved in this time has given the 620,000 patients who have had IVF or donor insemination, much-longed-for hope, that one day they will conceive a child of their own.

In 2023, the landscape of egg and sperm donation will change as the first cohort of donor-conceived people affected by the 2005 change to donor anonymity law, will be eligible to access identifying information about their donor. This, along with an analysis of donor treatment numbers, of donor registrations and their changing characteristics, is highlighted in the new Trends in Egg, Sperm and Embryo Donation report, published by the Human Fertilisation & Embryology Authority (HFEA).

The report has shown the dramatic increase in children born through egg, sperm and embryo donation over time. The number of children born with the help of a donor has nearly doubled since the 1990s with over 4100 children born in 2019 compared to around 2500 in 1993. Over 70,000 donor-conceived children have been born since 1991 and egg, sperm and embryo donation accounts for one in 170 of all births and for one in six births using IVF in the UK.

The largest proportion of births are from treatments using donor sperm, followed by egg donation. Births from treatments using donor embryos are least common but have increased from under 50 births in 2010 to over 200 births in 2019.

The number of children born from donor sperm has more than tripled over the last 15 years, from under 900 in 2006, and growing to over 2800 in 2019. This increase is largely due to female same-sex and single people having treatment.

'Offer of hope'

In addition to the change in family type with more single parents and same-sex couples having children, we know that donation can dramatically increase an older patient's chance of success. As birth rates decline with age when women use their own eggs, older women can increase their chances of having a baby by using donor eggs. In 2018/19, the birth rate per embryo transferred for patients aged 18-34 using their own eggs was 33 percent, compared to below five percent for patients aged 43-50. However, birth rates remained above 30 percent for all ages when donor eggs were used; a statistic that means we must question how many older patients are being encouraged to have treatment with their own eggs, when using donor eggs may provide a much higher chance of success. We recognise that this is a very complex and emotionally charged issue.

Disparities

The HFEA's Trends in Egg, Sperm and Embryo Donation report shows that IVF treatments using donated sperm or eggs are less commonly funded through the NHS. From 2016-2020, just 13 percent of donor treatments were funded by the NHS compared to around 40 percent of IVF treatments without donation.

We know that same-sex couples are increasingly using donor IVF treatment and they often can't access NHS funding unless they've had at least six rounds of unsuccessful intra-uterine insemination (IUI). The government published its long-awaited Women's Health Strategy this year which committed to putting a stop to this requirement (see BioNews 1152). This is a really important commitment, and we are engaging with the Department for Health and Social Care about this regularly.

We also know that in recent years sperm imported into the UK has increased; sperm from mixed, other and black ethnicity donors were more likely to be imported than sperm from Asian and white donors.

The availability of donor sperm or eggs depends where in the UK you live and so it is possible that the increase in imported donors is in response to a lack of ethnically diverse donors available in the UK, or a result of patient choice, as well as long waits in some areas. In response to our National Patient Survey 2021, 82 percent of patients who had used donor eggs, sperm or embryos said it was important that the donor's ethnicity matched their own. However, some ethnic minority patients found it difficult to find donors matching their ethnicity.

This shortage of sperm from men from certain ethnic minority backgrounds could relate in part to cultural and/or religious beliefs, as well as stigma around donation in these communities. It could also be due to general lack of awareness around donation in these specific areas.