What are the untold harms of Assisted Reproductive Technology (ART)?
Where does good clinical practice tip over into bad?
Where and how are patients exploited by clinicians and the commercial fertility industry?
These were some of the issues explored at a fascinating workshop about 'Defining abuse in ART', held on 3rd June 2019 , that I was honoured to have been invited to speak at.
The organisers of this event, Dr Nathan Hodson and Prof Susan Bewley, recently published a systematic review of abuse in ART that proposes a typology of the different ways patients may experience mistreatment during fertility treatment - including the exploitation of women (& how this intersects with other disadvantages), unnecessary or ineffective intervention, and avoidable harms to both patient and child.
Bringing together clinicians, bioethicists, social scientists, historians, human rights lawyers and patient advocates (alongside the fantastic Pamela Mahoney Tsigdinos: author of Silent Sorority and founder of ReproTechTruths), the goal of the workshop was to examine how professionals and the public can use this idea of ‘abuse in ART’ to question, critique and understand the worst excesses of the IVF industry.
“Patients are often depleted or consumed.
Treatment can use up patients because they buy into the stories sold by company websites.
These websites are glossy and bright and optimistic and often do not fully or faithfully represent patient experiences. I feel this is dishonest and disrespectful to patients.
But is it abuse? ... All I know is I felt deceived, used up, and outraged by supposedly great men. ”
My talk shared insights from the infertility community to explore the patient perspective: because whilst medicine is about evidence and data, the experience of going through fertility treatment is one of hope and heartache - and in order to develop effective safeguards against abuse, clinicians have to better understand the patient mindset, and better empathise with our experience.
It was a really engaging day with so many incredibly smart people, chewing over some really tricky questions - to which are no easy answers, but I'm really looking forward to seeing how this initiative progresses.
For more on this initiative check out
These remarks from Prof Susan Bewley at Fertility Fest: ‘Abuse and Exploitation: an open secret in the IVF business’
The full paper in the European Journal of Obstetrics & Gynecology and Reproductive Biology: Abuse in assisted reproductive technology: A systematic qualitative review and typology
This BMJ blog post on Sexuality, Reproduction, and The Etymology of Abuse