What Can the Fertility Sector Learn from the Infected Blood Scandal and Inquiry?

The latest PET event, chaired by PET director Sarah Norcross, focused on lessons from the UK's infected blood scandal, and the recently published final report of the Infected Blood Inquiry (see BioNews 1240).

Between the 1970s and 1990s, tens of thousands of people in the UK were infected with a host of diseases including HIV and hepatitis B, C and D after being given contaminated blood, blood products or other tissue. As a result of the substantial number of deaths attributed to these infections, many of those and their relatives who were affected are now able to seek compensation under new laws.

Norcross opened the meeting by detailing the number of ways people were able to become infected, referencing situations where blood transfusions were required such as during childbirth or surgery, or for treatments for bleeding disorders such as haemophilia. She recalled a time at an event where she listened to a patient advocate talk about his haemophilia and treatment for it, as well as the friends he had lost after they were infected by contminated blood products.

She added that the fertility sector might learn a number of lessons from the blood scandal, including how and when to inform people who are affected or involved, if it transpires that something has gone wrong. The next speaker, Professor Abha Maheshwari, lead clinician at Fertility Scotland, had much to say about this in relation to donated gametes.

Professor Maheshwari discussed the complexities and regulatory frameworks that surround fertility treatments and the giving and receiving of blood. Discussing similarities and differences between these areas, she highlighted the fact that they are heavily regulated compared to other clinical fields, and that this leads to frequent inspections and extensive quality management systems.

She observed that problems with infected blood were due originally to a national shortage of domestic supplies of blood, leading to reliance on imports. She added that a comparable situation exists in relation to fertility, where donor gametes are imported due to a lack of availability of donated gametes in the UK, and that this too raises concerns about differing international regulations and fragmented systems.

The second speaker, Professor Marc Turner, director of the Scottish National Blood Transfusion Service, talked through the findings of the Infected Blood Inquiry. He said that the Inquiry highlighted significant issues with donor selection, screening, and plasma fractionation processes, leading to widespread infections among recipients (especially those with haemophilia). He also noted that more recently, there has been an increase in new and emergent infections due to factors such as urbanisation and climate change, and a corresponding need for vigilance.

Professor Turner's main takeaway from the inquiry was the importance of prioritising patient safety and taking precautionary action amid uncertainty. He concluded that 'First and foremost, patients safety needs to be a paramount concern and guiding principle'.

The next speaker, Professor Emma Cave, a member of the Medical Ethics Expert Group at the Infected Blood Inquiry, delved deeper into the lessons learned and their relevance to the fertility sector. She highlighted that many expert reports were produced for the inquiry, including a report on medical ethics to which she contributed.

Professor Cave discussed three key lessons from the inquiry, beginning with the importance of obtaining informed consent and clearly communicating risks. She detailed an incident that occurred in England where a man attended a fertility clinic to have his fertility checked, and it later transpired that his sperm had been used for another couple's IVF treatment without his knowledge or consent. The second lesson was the importance of robust record-keeping and tracking systems, to reduce the likelihood of errors and ensure traceability. Professor Cave emphasised that failures in record keeping during the blood scandal impeded tracing sources of contamination and alerting patients.

The third lesson discussed by Professor Cave, picking up on a theme that she has written about previously in BioNews (see BioNews 1267), was the value of agile and proportionate regulations that can keep pace with scientific advancements. She stated, 'Some of these scientific developments could take years to come to fruition, but unless we debate them and prepare our regulatory environment for them, we risk falling into the same trap.' Professor Cave concluded that while regulation can be perceived as overly bureaucratic, it plays a vital role in providing clarity and building public trust.

The final speaker was Professor Bobbie Farsides, also a member of the Medical Ethics Expert Group at the Infected Blood Inquiry, as well as a former member of the UK's fertility regulator – the Human Fertilisation and Embryology Authority. During her presentation, she emphasised the importance of understanding personal stories from those affected by medical scandals, noting that these can involve intergenerational trauma that affects families deeply.

Professor Farsides also spoke about the need for compassionate communication when delivering bad news or discussing sensitive issues. 'I think it's always very important to remember that the infected blood scandal is a cross-generational, intergenerational, often familial experience that touched grandparents, parents, children, partners.' Like Professor Cave, she also elaborated on themes that she has written about in BioNews, in her case the idea of 'ethical preparedness' (see BioNews 1197).

During audience questions and comments, concerns were raised about whether paying donors in medical contexts could lead to dishonesty, with some evidence suggesting that financial incentives might encourage individuals to conceal risks due to monetary gain. Other audience contributions emphasised the importance of transparency when things go wrong in medical practice, and there was a consensus among the panellists that medical professionals have a duty to be honest with patients, potential legal ramifications notwithstanding.

The final question directed to the panellists asked them to identify what they believed was the biggest risk to the fertility sector. Several speakers mentioned misinformation and regulatory challenges. Additionally, Professor Cave said 'The biggest risk is the risk of injustice that comes from inequity of access'.

This event shone a light on the UK's infected blood scandal and its aftermath, and provided a fascinating insight into what the fertility sector can learn from these events.

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The next free-to-attend PET events will be:

• Is Fertility Treatment a Solution to Population Decline?, taking place online on Wednesday 26 March 2025 – register here.
• Fertility in Flux: What Can State-Funded IVF Do for Population Growth?, taking place online on Wednesday 9 April 2025 – register here.
• Our Future Health, UK BioBank, Genomics England: Exploring the Impact, taking place online on Wednesday 30 April 2025 – register here.
• IVF and Miscarriage: Reducing Risks, Providing Support, taking place online on Wednesday 21 May 2025 – register here.
• Lifestyle, Obesity, Diabetes: Optimising IVF Outcomes for Patients, taking place in person in Edinburgh on Wednesday 28 May 2025 – register here.
• Diversity in Health Data: Achieving Benefit for All, taking place online on Wednesday 4 June 2025 – register here.
• Rare Disease Genomic Testing: How Do We Make Access Equitable and Timely?, taking place online on Wednesday 18 June 2025 – register here.
• 40 Years of the Surrogacy Arrangements Act: What Next for Surrogacy?, taking place online on Wednesday 16 July 2025 – register here.