Challenges and Changes: What's Happening Across Europe?

The third session of the 2023 PET (Progress Educational Trust) Annual Conference – 'How Much Change Do We Want? Updating Fertility, Embryo and Surrogacy Law' – highlighted how rules governing fertility treatment and embryo research differ across Europe, and explored how these rules are changing.

'Challenges and Changes: What's Happening Across Europe?' was chaired by Professor Joyce Harper, from the Institute for Women's Health at University College London.

The first speaker, Anja Pinborg – professor of reproductive medicine at the University of Copenhagen, Denmark, and former chair of the Nordic Fertility Society – focused on the European Society of Human Reproduction and Embryology (ESHRE) guidelines on add-ons in assisted reproductive technologies (ART). These good practice recommendations for treatment add-ons in reproductive medicine are the result of a recent collaborative effort between experts across Europe (see BioNews 1217).

Professor Pinborg's began her talk entitled 'Add-Ons in ART: Can Funding for Fertility Treatments Minimise the Uptake?' by immediately answering 'Yes, it can'. The talk progressed with a reference to findings from an Australian study published in BMC Health Services Research, which found that reduced public funding for fertility treatment from the Australian Government resulted in a significant reduction in fresh cycles due to increased cost. Professor Pinborg then went on to state that similar observations have also been made in Denmark, with patients often unable to afford additional treatment cycles. She highlighted how the increased cost, if treatment cycles are unsuccessful, may also cause patients to become mistrustful and lose confidence in the system.

Professor Pinborg then transitioned into a more detailed discussion of the add-ons discussed in the ESHRE guidelines. She acknowledged that while healthcare providers are of course aware of patients' desires and demands, it is an obligation of healthcare professionals to educate themselves on the efficacy and associated risk of different fertility treatments. Treatment add-ons are optional, and are aimed at enhancing the effect of a treatment or lessening the treatment's side effects.

According to Professor Pinborg, reproductive outcomes – including live birth rate and risk of miscarriage – were a primary consideration when formulating the guidelines. Interestingly, of the 37 add-ons discussed in the ESHRE guidelines, only a handful of add-ons were accepted as recommended for use by most patients or patient groups with specific indications. Overall, Professor Pinborg argued for a collective responsibility among healthcare providers to ensure that treatment recommendations for patients are safe, evidence-based and have well-established benefits. Such considerations are expected to reduce patient drop-out due to increased financial burden, as well as improving overall patient trust in reproductive care.

Discussion of assisted reproduction in Europe continued into the second talk of the session, 'Donor Conception and Anonymity: Unique Challenges in Different Systems'. Presented by Dr Kirsten Tryde Macklon, head of fertility preservation at Rigshospitalet's Department of Fertility in Copenhagen, this talk largely focused on laws in Denmark governing gamete donation and donor conception. With an emphasis on the Danish perspective, Dr Macklon's talk enabled direct insight into fertility legislation in a country that still permits anonymous donation.

Since 2012, both anonymous and non-anonymous gamete donation have been available in Denmark. According to Dr Macklon, where donors opt for anonymous egg or sperm donation, recipients only have access to a short list of basic physical characteristics including the donor's hair colour, height and ethnicity. Donors who instead opt for non-anonymous donation permit optional release of additional information to a resulting child, once that child reaches 18 years of age.

Dr Macklon went on to discuss the testing and screening that donors in Denmark must undergo, prior to being approved for gamete donation. In addition to screenings for venereal diseases and a comprehensive medical questionnaire that both egg and sperm donors must complete, sperm donors must also undergo karyotyping and genetic carrier testing for common monogenic conditions. This discussion transitioned seamlessly into a side-by-side comparison of the rights of sperm donors against those of egg donors. Dr Macklon noted that while egg donors can enquire after one year regarding any resulting children, sperm donors are generally unable to learn of any resulting children.

The discussion then rerouted slightly and homed in on the 'Unique Challenges in Different Systems' aspect of Dr Macklon's talk. Looking to provide a quick insight into donor conception in Sweden – a country that, like the UK, has banned anonymous donation – Dr Macklon referred to a 2022 study published in Human Reproduction that reported just 60 of 900 people conceived through non-anonymous sperm donation requesting information about their donor. This finding suggests a general lack of interest in contacting one's donor among donor-conceived people, with the important caveat – acknowledged in the study – that a proportion of the 900 people studied may not have been aware that they were donor-conceived.

Dr Macklon wrapped up her talk recounting her own personal experience with the direct-to-consumer genetic testing company 23andMe, concluding from this experience that 'donor anonymity indeed is a thing of the past'.

The session then transitioned into the third and final talk, which addressed the recent advice from the Health Council of the Netherlands to extend the limit on human embryo culture from 14 to 28 days in embryo research (see BioNews 1214). 'Just a Fortnight Away: On the Dutch Advice to Extend the 14-Day Rule to 28 Days' was presented by Dr Hafez M'hamdi, vice chair of the Dutch Centre for Ethics and Health. He was a member of the committee of scientists, legal experts and ethicists that had drafted the Health Council's recommendation to double the 14-day limit.

In a thoughtful exploration of both ethical and scientific considerations, Dr M'hamdi recounted both the 'intrinsic' and 'extrinsic' considerations that went into this effort. He first assessed the intrinsic considerations, which he described as the considerations that define the moral status of the embryo and therefore also 'the embryo's entitlement to protection'. Of all intrinsic factors considered, only 'potentiality' – the view that embryos matter on the basis of developmental potential – was considered a valid argument against extension of the 14-day rule. Dr M'hamdi went on to articulate the extrinsic considerations, which he described as the ways in which people perceive and place value on embryos.

Following his discussion of complex ethical concepts, Dr M'hamdi explored the scientific considerations in favour of extending the 14-day rule. In addition to obtaining a better understanding of embryonic development after 14 days, the committee agreed that extending the 14-day rule would permit improved understanding of developmental disorders, as well as informing disease treatment and prevention. Dr M'hamdi also acknowledged that a better understanding of unsuccessful embryo transfer, and abnormal embryonic development, may inform safer and more effective fertility treatments. Ultimately, the Dutch Health Council's recommendation to extend the 14-day rule to 28 days was made largely on the grounds of the 'societal perspective, which is closely tied to the public interests that embryo research serves'.

The session concluded with an audience-driven discussion touching on varied themes and topics. Attendees and speakers alike acknowledged differences between the systems that had been discussed, highlighting discrepancies between ESHRE guidelance on add-ons and advice from the HFEA, as well as discrepancies between Danish and UK laws concerning donor anonymity. It was a thought-provoking discussion that disentangled generalisable clinical, societal and ethical considerations. Overall, I found the third session of the PET 2023 Annual Conference to be eye-opening, provising key insights into European arrangements.