7 March 2025
Louisa Ghevaert was pleased to attend a Progress Educational Trust Event on 26 February 2025 “What Can The Fertility Sector Learn From The Infected Blood Scandal And Inquiry?”. The Contaminated Blood Scandal was one of the worst health scandals in the UK from the 1970s – 1990s, resulting in thousands of deaths from infected blood transfusions and blood products. This event looked at the similarities between fertility (eggs, sperm and embryos) and blood, the findings of the Infected Blood Inquiry in the UK and the lessons to be learned across the fertility sector to ensure optimum patient safety and care.
Sarah Norcross opened this event and explained that the UK’s Infected Blood Scandal from the 1970s – 1990s lead to thousands of people being infected with diseases like Hepatitis and HIV through blood transfusions during childbirth and surgery and through treatment of injury and haemophilia. It resulted in 3,000 deaths and many more being entitled to compensation. She went on to explain that the findings from the Infected Blood Inquiry are relevant for the fertility sector in a number of ways including in the storage and use of gametes and embryos, in communicating with patients and in terms of patient safety.
Image: Sarah Norcross Director Progress Educational Trust
Professor Abba Maheshwari’s session looked in more detail at the similarities between fertility (eggs, sperm and embryos) and blood. She explained that blood and fertility are both substances of human origin. They are both covered by strict legislation and strict inspections. They both require the operation of quality management systems. Furthermore, they both impact the donor and the recipient. That said, she explained that blood saves life whereas gametes and embryos create life. Moreover, there is anonymity for blood donation whereas there is a system of identity release gamete donation in the UK. There are also only limited places where you can donate gametes whereas there is much wider choice for blood donation and they operate different processes. Professor Abba Maheshwari went on to explain that we are short of gamete donors, as we were short of blood. Added to this, regulation of gametes varies in different parts of the world (as was the case for blood). There is also a fragmented gamete donation system, where choices are made regionally rather than through a co-ordinated national system.
Image: Professor Abba Maheshwari, Lead Clinician at Fertility Scotland, Clinical Director and Lead Consultant for Reproductive Medicine and Surgery at the Aberdeen Fertility Centre
Professor Marc Turner explained that during the 1970s and 1980s around 30,000 people were infected or seriously affected by HIV or Hepatitis as a result of blood transfusions in the UK, of whom 3,000 died. There were two main patient groups, The first were those receiving blood components (e.g. blood cells and platelets) with 2.5 million blood products given each year in the UK. The second received plasma products (e.g. coagulation factor 8 or 9 or immunoglobins). This led to 1,250 children being infected, of whom approximately 75 percent died.
Professor Marc Turner went on to explain that that Infected Blood Inquiry in the UK focused on HIV and Hepatitis C (not Hepatitis B or other viruses). There had previously been other investigations and legal actions around the world, including in Canada in 1993, Portugal in 1995, Japan in 1995, France in 1999, Ireland in 1999 and Italy in 2001. He explained that there had been four major inquiries in the UK: A v Others v National Blood Authority 2001, Archer Inquiry 2007 – 2009, House of Commons Science & Technology Committee 2014 and the Penrose Inquiry (Scotland) 2008 – 2015. There was also a Fatal Accident Inquiry and civil cases, as well as engagement of the Consumer Protection Act 1987 and Corporate Manslaughter and Corporate Homicide Act 2007. As such, there was a large legal framework. The Infected Blood Inquiry was announced in July 2017 and it started taking evidence in August 2019. There were over 2,000 core participants, producing over 2000 pages in its final report which was published on 20 May 2024 and contained 12 recommendations. It also led to the Infected Blood Compensation Authority being established.
The Infected Blood Inquiry focused on a number of key issues. In terms of donor selection, there were deficiencies in timely implementation of questioning of donors about intravenous drug use and continued collection of blood in prisons where there was a higher prevalence of Hepatitis amongst the prison population. Additionally, in the 1970s and 1980s, only a proportion of donated blood came from the UK and a substantial amount of plasma products came from the US, so the UK was not self-sufficient. There were also delays and failures in donor screening and implementation of HIV and Hepatitis testing. Furthermore, there were issues with quality management systems and clinical practice, including in terms of the extent of informed consent given by patients.
Professor Marc Turner then summarised a number of lessons which the fertility sector can learn from the Infected Blood Scandal and Inquiry:
- Patient safety should be the paramount and guiding principle.
- The search for certainty was and can be an enemy of achieving progress and taking some action.
- Risks in public health need to be addressed with speed, consistency and an objective review of the evidence.
- What aids process is a clear structure for decision-making.
Professor Marc Turner then looked to the future. He explained that in terms of virus ecology, there are 75 agents known or potentially transmissible by blood. However, new and emergent infections are increasing due to urbanisation, climate change (e.g. changes in mosquito patterns), globalisation (e.g. spread of Covid-19) and genetic variants. Some of these will prove to be transmissible by substances of human origin and this situation can evolve very rapidly.
Image: Professor Marc Turner Director of the Scottish National Blood Transfusion Service, and Member of the UK Government’s Advisory Committee on the Safety of Blood, Tissues and Organs and Professor of Cellular Therapy at the University of Edinburgh’s Institute for Regeneration and Repair,
Professor Emma Cave explained that as part of the Infected Blood Inquiry, they looked at relevant medical ethical issues. The lessons that they identified must be shared widely across all sectors, including the fertility sector. There are similarities between infertility and blood contamination, including social stigma and fast paced scientific developments. She went on to explain they focused on three key issues, namely the:
- Importance of informed consent.
- Importance of record keeping and tracking systems.
- Importance of robust and agile regulation.
Professor Emma Cave went on to say that the fertility sector is not immune to informed consent issues. She explained that consent processes need to be meaningful. There needs to be communication of risks, implications, uncertainty of risks and the likelihood of success. She explained that there can be no consent without adequate communication. In terms of record keeping and tracking systems, she explained that there is no room for complacency for the fertility sector in the storage of gametes to avoid mix-ups and mechanisms to deal with mistakes and errors. Furthermore,, she explained there is value for the fertility sector in having robust regulation. It was found by the Infected Blood Inquiry that there had been inadequate screening of blood. She went on to say that proportionate regulation is needed so that there is public trust, but this also needs to be agile and up to date. As such, the Human Fertilisation and Embryology Act 1990 needs to be updated, to take account of things like embryo models.
Professor Bobbie Farsides delivered the last session. She explained that it was the personal stories by the infected and the affected at the Contaminated Blood Inquiry that really came through. This was because it was a cross-generational and familial experience that affected grandparents, parents, children and partners. She explained that these personal stories are key to understanding the harms and wrongs people have suffered. She went on to explain that it is important to learn how to treat people caught up in a medical incident or scandal. Those involved in the Infected Blood Scandal had gone through a traumatic experience and there was inter-generational trauma. She asked where are the connections with assisted reproduction? She went on to explain that there is social stigma with infertility (as there was those patients given infected blood). This makes it traumatic to undertake assisted reproduction. If you are looking at pre-genetic diagnosis, for example due to an inherited condition, this can carry significant generational trauma. During the Infected Blood Inquiry, she explained that they heard stories from people who had been told they had been given infected blood in an insensitive way. She explained that people who have sought ante-natal screening report a lack of understanding, insensitivity and poor use of language. Added to this, she explained that some infertility patients have HIV and Hepatitis C.
Professor Bobbie Farsides concluded her session explaining that we should always remember that science and medicine can be enriched by knowledge and experience of the social sciences. The experiences of people receiving medical care and assisted reproduction treatment are important. She then asked whether we have got better at telling people when things go wrong? Is this done sensitively and with sufficient care in terms of the impact upon them? She explained that it would be helpful to move to a model of trauma informed care. Patients have complex backgrounds and may have often encountered discrimination, poor treatment and conditions. As such, she explained that we must train future generations of medical students to be genuinely patient centered in their care and work with patients to set goals and shared values so lessons can be learned.
Images: Professor Emma Cave, Member of the Medical Ethics Expert Group at the Infected Blood Inquiry and Professor of Healthcare Law at Durham University, and Fellow of the Wolfson Research Institute for Health and Wellbeing and Professor Bobbie Farsides Member of the Medical Ethics Expert Group at the Infected Blood Inquiry and Professor of Clinical and Biomedical Ethics at Brighton and Sussex Medical School
Need a fertility or modern family lawyer?
Given rapid advances in reproductive medicine and growing demand fro fertility treatment it is more important than ever to maximise reproductive choice, optimise care and protections and make informed decisions about pathways to parenthood.
Specialist fertility and family law strategies help inform effective approaches to (in)fertility and maximise reproductive health outcomes, as well as proactively manage family building arrangements. They identify and address a range of legal and practical issues and challenges associated with pre-conception and fertility treatment, pregnancy, family life and end-of-life care to maximise successful outcomes. In doing so, this addresses:
- Legal issues and family building options due to impaired fertility including cancer diagnosis, unsuccessful conception, age-related fertility decline, change in gender, delayed parenthood.
- Complex personal and family situations.
- Unexpected death of a loved-one and issues associated with posthumous storage and use of eggs, sperm and embryos in fertility treatment (e.g. due to an accident or illness).
- Legal issues and options associated with assisted conception involving a known donor, co-parent, ex/partner or identity-release or non-identifiable donor (e.g. legal parentage, parental rights, financial responsibility and dispute mitigation).
- Legal and wider aspects of international surrogacy or a UK surrogacy arrangement.
- Difficulties with storage and use of frozen eggs, sperm and embryos in fertility treatment in the UK (e.g. problems with consent).
- Issues with import of frozen gametes and embryos into the UK for use in fertility treatment and surrogacy (e.g. due to anonymous and commercially obtained gametes and embryos engaging UK public policy restrictions).
- Issues with the export of frozen gametes and embryos abroad for use in fertility treatment and surrogacy (e.g. consent and storage term difficulties).
- Legal and biological parentage issues and disputes (e.g. concerning DNA testing, direct-to-consumer genetic testing, rectification of birth certificate, declaration of parentage, step-parent adoption, recognition of overseas adoption, parental order).
- Care and upbringing of children following a dispute with an ex-partner, parent, donor or surrogate (e.g. contact, residence, financial arrangements, parental responsibility, specific issue or prohibited steps).
- Expert witness fertility, surrogacy and donor conception law services.
If you need advisory, consultancy or legal assistance to put in place effective strategies to manage preconception, fertility treatment and global family building, pregnancy, birth and family life contact Louisa Ghevaert by email louisa@louisaghevaertassociates.co.uk or telephone +44 (0)20 7965 8399.
Images: Louisa Ghevaert, CEO & Founder Louisa Ghevaert Associates
