Advances in science are giving more and more women the chance to become pregnant – and clinicians are facing issues they have never had to think about before. A campus course on high-risk pregnancy and patient autonomy explored the latest science and the biological, medical, ethical and psychological issues that arise when a mother-to-be is at higher risk of health problems.
The meeting, which was organised by the Implantation and Early Pregnancy and Ethics and Law SIGs, covered a wide range of topics during three days of presentations and discussions. These included the ethical dilemmas associated with the latest advances in genetics, how to optimise clinical outcomes and the importance of patient communication and multi-disciplinary care.
Henriette Svarre Nielsen, of the University of Copenhagen, opened the meeting by posing a provocative question: are clinics routinely introducing higher risks for patients by performing ICSI in cases without severe male-factor infertility?
Professor Svarre Nielsen presented details of a recent randomised controlled trial in which she and colleagues compared cumulative live birth rates (CLBR) of ICSI and conventional IVF (c-IVF) in 824couples with normal or non-severely reduced sperm quality.(1)
The study, one of the first of its kind, found there was no significant difference between the CLBR in the ICSI and c-IVF groups (42% vs 46.6%, relative risk (RR) 0.90, 95% CI 0.77–1.05).
Professor Svarre Nielsen then pooled the results of her study with those of two recent similar studies. (2,3)
The unpublished meta-analysis of more than 4,000 patients randomly assigned to ICSI or c-IVF found the CLBR within 12 months of randomisation to be significantly lower after ICSI compared with c-IVF (RR 0.89, 95% CI 0.84–0.96).
The number needed to harm was 20, meaning there would be one less birth if 20 patients without severe male-factor infertility were given ICSI instead of c-IVF. This equates to thousands of babies not being born globally each year, said Professor Svarre Nielsen, who added that c-IVF remains a viable and preferable first-line treatment when there is no severe male factor.
Many of the presentations, including one by Zdravka Veleva, of the University of Helsinki, reminded clinicians about the importance of following the patient through their pregnancy.
Single embryo transfer (SET) is one way of optimising clinical outcomes, while minimising risk, said Dr Veleva, who coordinated ESHRE’s recent guideline on the number of embryos to transfer in IVF and ICSI.
Twin pregnancies pose health risks for the mother and child, including higher odds of ectopic pregnancy, gestational diabetes and preterm birth. Psychosocial issues to consider include increases in stress, financial strain and social isolation.
It is clear, however, that SET can avoid many complications and bring benefits to the mother, baby, family and society, said Dr Veleva.
A bigger question, she said, is when to do double embryo transfer (DET). She used evidence that was gathered for the guideline to explain why age, embryo quality and patient preference are not reasons to perform DET.
Heidi Mertes, of Ghent University, made the point that whether a patient is at high risk of serious harm is highly subjective.
Reasons for this include bias in risk assessment: patients and clinicians may use heuristics, or mental shortcuts, to make decisions. For example, a doctor with a recent case of serious complications in the pregnancy of a patient with Turner syndrome may be overly pessimistic when assessing their next Turner patient.
Preconceptions about certain groups of patients, such as same-sex couples or women with a higher BMI, can also lead to bias, said Professor Mertes.
In addition, a patient with a great desire to be a parent may be willing to accept more risks than one who is less motivated to have a child. Similarly, patients who are blind may perceive the risk of having a child who is blind as being less serious than patients who can see.
What does all this mean for policy and treatment of high-risk patients? Professor Mertes said the answer could be to find a middle way between set guidelines and policies and case-by-case assessments – for example, guidelines that allow for exceptions.
She also touched on the importance of shared decision-making, a recurring theme of the workshop, and stressed the need for accountability. If a joint decision cannot be reached, the clinician should be transparent about their reasons; a phone call or letter stating that treatment is denied is not enough.
Eva Van Steijvoort, of KU Leven in Belgium, emphasised the importance of patient communication. She has recently carried out a systematic review of the psychosocial and ethical considerations of reproductive decision-making in people who are living with cystic fibrosis (CF).
Dr Van Steijvoort said the advent of new therapies means that more CF patients are reaching adulthood, where they face important reproductive decisions.
These patients desire normalcy and to be seen as a whole person, rather than as a pair of lungs, said Dr Van Steijvoort. It is important to initiate conversations about the dilemmas they face and to provide reliable and evidence-based information without judgment, she explained.
She also called for more interaction between CF and reproductive medicine teams and training for healthcare professionals on topics such as carrier screening, CF medication use in pregnancy and the effect of pregnancy on CF.
Another common theme was how to deal with the vast amount of information made available by advances in genetic testing.
Josep Pla Victori explored the implications of comprehensive carrier screening (CCS). Also known as expanded carrier screening, CCS assesses an individual’s risk of passing on hundreds – or thousands – of genetic diseases and is becoming increasingly accessible.
However, there is a lack of consistency in the genes that various medical societies suggest should be used in panels and huge heterogenicity in the tests available.
A recent study of 22 commercially available tests found that they screened for between 44 and 2,054 genes(5). Only 15 genes were common to all the tests and 695 genes featured in just one panel. There was also no correlation between cost and number of genes screened, said Mr Pla Victori, of IVI-RMA Global.
Nevertheless, most at-risk couples act on the results, and so obstetric teams need to be familiar with the technology.
Mr Pla Victori concluded by saying that genetic counselling is key to patient autonomy. He told Focus on Reproduction that it allows informed decision-making in the face of complex and potentially emotionally charged genetic information.
He added: ‘Genetic counselling ensures that individuals can make empowered, thoughtful choices by clarifying risks, reducing misunderstandings and guiding patients through next steps, especially when both partners are carriers.
‘It also promotes equity by tailoring information to each patient’s level of understanding, making autonomy meaningful and accessible to all.’
References
1. Berntsen, S., Zedeler, A., Nøhr, B. et al. IVF versus ICSI in patients without severe male factor infertility: a randomized clinical trial. Nat Med (2025). https://doi.org/10.1038/s41591-025-03621-x
2. Dang VQ, Vuong LN, Luu TM, Pham TD, Ho TM et all. Intracytoplasmic sperm injection versus conventional in-vitro fertilisation in couples with infertility in whom the male partner has normal total sperm count and motility: an open-label, randomised controlled trial. Lancet. 2021 Apr 24;397(10284):1554-1563. doi.org/10.1016/S0140-6736(21)00535-3
3. Wang Y, Li R, Yang R, Zheng D, Zeng L et all. Intracytoplasmic sperm injection versus conventional in-vitro fertilisation for couples with infertility with non-severe male factor: a multicentre, open-label, randomised controlled trial. Lancet. 2024 Mar 9;403(10430):924-934. DOI: 10.1016/S0140-6736(23)02416-9
4. Vanhollebeke J, Van Steijvoort E. Reproductive decision-making of people living with cystic fibrosis and their partners: A systematic review of psychosocial and ethical considerations. Patient Educ Couns. 2025 Jan;130:108449. DOI: 10.1016/j.pec.2024.108449
5. Wang T, Scuffham P, Byrnes J, Delatycki MB, Downes M. An overview of reproductive carrier screening panels for autosomal recessive and/or X-linked conditions: How much do we know? Prenat Diagn. 2023 Oct;43(11):1416-1424. DOI: 10.1002/pd.6434
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