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Preface
It is widely recognized that women’s health is an area that deserves more attention than it presently receives, from the need to involve women in research trials to more extensive and effective research on women- specific conditions. There is growing recognition that pathophysiology and pharmacology as applied to women cannot be wholly extrapolated from research in men, although this has remained the status quo for many years now.
Between 1977 and 1993, women of ‘child-bearing potential’ were intentionally excluded from clinical trials by the United States Food and Drug Administration – one of the world’s most influential regulators of drugs and medical devices. Two reasons were given for this exclusion – first, prompted by the consequences of the Thalidomide scandal, was that research on women could potentially harm an unborn child even if they were not known to be pregnant at the time, and second, that the cyclical hormonal fluctuations in women would complicate the analysis of clinical trial results. The assumption was that male and female physiology were largely the same, and the results on male research participants could simply be extrapolated to apply to women. Although this was reversed in 1993 with the National Institutes of Health (NIH) Revitalisation Act, incredibly it was only in 2019 that federal funding for women’s health research was classified based on scientific relevance to women. Funding for women’s health and women’s leadership in academic medicine – which have been historically linked – continues to remain low.
Progress in women’s health is often complicated by the systemic underrepresentation of women in political life and a gendered present-day social order. In the absence of sufficient representation of women in positions of influence, progress in women’s health is contingent on leadership that may be attempting to act in their best interests without adequately understanding or representing their needs. For example, male scientists and policymakers may be misled into thinking they are protecting women and children from the risks inherent in clinical research. However, instead of exposing consenting women to potential risks in a closely monitored research setting, they are exposing many more women to risks in the clinical setting without the carefully established safeguards necessary in research trials.
The research I present in this thesis relates to two common women’s health-related issues from two different perspectives. The first is prenatal testing, which relates to care decisions and women’s bodily autonomy in the healthcare setting. The second, also on the pregnancy/parenthood continuum, concerns human milk banking, with a focus on public health.
In the following chapters, I examine the needs of women in the administration of healthcare through these distinctively female experiences, how they are facilitated or limited, and the gaps that need to be examined and filled.
I begin by introducing antenatal care as is delivered today, and the contentious issues around prenatal testing. Based on the research I have carried out across Switzerland, I then present the issue from the perspectives of mothers based here, and provide suggestions on how autonomy –in what is presently a behaviourally directive field – can be returned to the women whom it impacts.
I then explore the less publicized but equally important public health issue of donor human milk, the extensive knowledge gaps that prevent much needed progress in the field of human milk banking, and the lack of attention from national and global health authorities that both prevents the safe procurement and utilization of donor human milk, and enables the exploitation of both donors and recipients.
It is my hope in furthering this work that the lessons drawn from the examination of these two fields be applied to women’s health more broadly, with women’s health itself be defined more expansively to not only include reproductively-specific experiences, but any health condition affecting women.
