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

examples: 

made responsible for fertility

use of biological resources

Abuse of women by society

examples:

sex-selective procedures

hormonal experimentation

Abuse of men's consent

examples:

post-mortem sperm extraction

dishonesty about implications of sperm donation

Intersection with other disadvantages

examples: 

exploitation of lesbian couples

financial abuse 

Unnecessary procedures

examples:

inadequate preventative effort

unethical research and fraud

Ineffective procedures

examples: 

poor quality research

overpromising about results

Avoidable harm to offspring 

examples:

avoidable health risks to child

withholding knowledge of father

Avoidable harm to participants

examples: 

division after intra-familial donation

fear of rejection after extra-familial  donation

Failures of data management

examples:

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."

*

Email me at alison.motluk@gmail.com. 

Follow @HeyReprotech and @AlisonMotluk on Twitter.