Defining abuse in assisted reproduction
Is there abuse in the practice of assisted reproduction? If so, what does it look like, how should we think about it, and how widespread might it be?
Writing about assisted reproductive technology (ART) over the years, I've occasionally had the feeling I was writing about abuse. But abuse was not a word I tended to use to describe what I was seeing.
It turns out I'm not alone. According to a systematic review of published works linking the term abuse with ART, only 34 items turned up. "We were surprised by the shortage of papers making claims about exploitation and abuse," one of the authors, Nathan Hodson, told me. The study was published last Friday.
Nevertheless, after examining the publications, Hodson, a medical doctor at Northampton Hospital in the UK, and his coauthor, Susan Bewley, a consultant obstetrician and professor emeritus at King's College London, saw some broad themes: excessive intervention, failure to think about and deal with the consequences, and exploitation related to class. In their paper, the authors propose a way to start classifying the abuse seen in assisted reproduction. Only by acknowledging its existence can we hope to eliminate it, they write. They call for more primary research.
Yesterday, Hodson and Bewley led a workshop in London with the aim of testing their proposed framework. Theoretically, what might abuse in ART look like? What can we learn from abuse in palliative care, HIV care and psychiatry? In these other fields, has using the label of abuse been an effective tool for critiquing ethical failures?
This is the first time I've seen anyone examine the field of assisted reproductive technology specifically through this lens. In retrospect, I can't believe it's taken so long. Kudos to all those involved in kickstarting this important work.
Below, a sampling of their typology.
Abuses in assisted reproduction
Abuse of women within the family
made responsible for fertility
use of biological resources
Abuse of women by society
Abuse of men's consent
post-mortem sperm extraction
dishonesty about implications of sperm donation
Intersection with other disadvantages
exploitation of lesbian couples
inadequate preventative effort
unethical research and fraud
poor quality research
overpromising about results
Avoidable harm to offspring
avoidable health risks to child
withholding knowledge of father
Avoidable harm to participants
division after intra-familial donation
fear of rejection after extra-familial donation
Failures of data management
loss of contact with people with embryos in storage
failure to collect data on research participants
For the full typology, see the paper.
What does the word abuse even mean? In a recent BMJ blogpost, one of the conference facilitators explored the origins of the word. "I was struck by how the meaning of abuse has journeyed alongside sexuality and reproduction for centuries," she writes. It started out meaning to use up, consume, misapply or outrage, she notes, and later it took on meanings like misuse and deceive. In subsequent years, the word got tied up with the misuse of money or power, and with prostitution, homosexuality, masturbation and incest. By the end of the last millennium, it was strongly associated with unwanted sexual activity.
"Outrage is certainly what I felt after my reproductive care and fertility treatment," she writes. "Patients are often depleted or consumed. Treatments 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."
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