Reviewed by Dr Eleasa Sieh

4 MINUTE READ

From Luke’s Journal 2021 | Children of God | Vol.26 No.3

I was recently reminded that working within the medical field can act as its own “echo chamber” complete with biases, oversimplification, and hubris. And so I think it wise as Christian healthcare workers to be challenged in our presumptions from voices outside of the healthcare professional role, to face our own personal biases and meet them with the truth and grace of the Christian faith.

“Defiant Birth: Women Who Resist Medical Eugenics” edited by Melinda Tankard Reist gives voice to the women and children in our society who chose not to conform to medical “expert” advice to terminate their pregnancies due to abnormal prenatal genetic diagnostic tests or due to their own physical disabilities. The thrust behind such coercive pressure was part of a movement of the dark side of medical eugenics. 

Eugenics is a term that was coined in 1883 by English statistician Francis Galton, cousin of Charles Darwin, after studying the heritable qualities of human intelligence and ability “to encompass the idea of modification of natural selection through selective breeding for the improvement of humankind”¹ , and has carried the negative association with its current definition as “the practice or advocacy of controlled selective breeding of human populations (as by sterilization) to improve the population’s genetic composition”². Reist opens this book with a dense introduction packed with references that details the routinisation of prenatal genetic screening in medical practice. She also highlights the attitudes of the medical profession towards screening and abortion against the backdrop of rapidly advancing reproductive technologies and genetic engineering developments, including in-vitro fertilisation, sperm donation, embryo freezing and sex-selection of embryos. She then goes on to question whether women who are counselled about prenatal genetic screening truly have freedom of choice when the test is “routine medical practice” and subsequent consultation after a “high risk” result from their obstetrician/gynaecologist is assumed to be a decision to terminate the pregnancy?

“Reist gives voice to the women and children in our society who chose not to conform to medical “expert” advice to terminate their pregnancies…”

This is followed by the heart of the book, nineteen first-person narratives from women who courageously share their most vulnerable moments facing presumed infertility or miscarriage, in the context of difficult physical, psychological, and social barriers. From a woman born with cerebral palsy to the wife of a former Deputy Prime Minister of Australia, from a Welsh woman who lives with physical disabilities caused by thalidomide to a Canadian family physician: the voices speaking about the discrimination they faced from family, strangers, and medical professionals come from a breadth of social statuses. I would have liked to have a wider breadth of ethnicities represented. Nonetheless, each story reminds the reader that there are human lives at stake at the end of these preconception and early conception tests, and even genetically normal children when abnormal screening test results are proved wrong.

Reist ends the book reiterating that the contemporary “management of disability” is based on a medical model which only addresses the needs of disabled people and other marginalised groups in limited ways and calls for an “attitudinal and ideological shift… so that able-ism can be seen as on par with, for example, racism and sexism.” She advocates for societies that provide appropriate and adequate care for women who give birth to children with disabilities, which will enable individuals in these societies to become more empathetic, compassionate, and humane. In essence, inclusion of those with disabilities in society reflects the interdependence we have as humankind. 

As a GP, it has been ingrained into my training that it is part of my duty of care to fully inform all pregnant women of these prenatal tests that are readily available to women as part of “routine antenatal care”. After reading this book, I wonder at the implications of the terminology “high risk” to describe the results of these screening tests to pregnant women, and also what implications are made during consultations with maternal-fetal medicine or genetic counselling service. I would like to believe that there are more open-minded, less paternalistic specialists in these fields when counselling women and their partners about these results. 

I do believe there are positive changes in Australia working towards the society that Reist calls for. The recent SBS program “What do Australians really think about…” tackled the topic of disability, highlighting the fact that 1 in 5 Australians live with some type of disability. One of the key findings in a national survey conducted in January to February 2021 of 2000 Australians, 1600 of whom did not have a disability and 400 who did, 40% of respondents with a disability reported to have experienced harassment because of their disability. However, only 52% of respondents agreed that people with disabilities aren’t as effective at work³. The National Disability Insurance Scheme (NDIS) is another example of a changing national landscape for those living with a disability, certainly with its own shortcomings but a valuable resource nonetheless.

This book should be included in the library of those who have a heart to listen to the voices rarely heard in the corridors of our workplaces or mainstream media. We who assume roles of medical advisors would do well to continue to listen to voices of women such as these. 

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