A lawsuit filed by a Toronto woman against a fertility clinic that she claims was responsible for the loss of dozens of her eggs has drawn attention to a reproductive industry that doctors and medical regulators say is lacking in...
Review of Taking Baby Steps: How Patients and Fertility Clinics Collaborate in Conception by Jody Lyneé Madeira
Taking Baby Steps, Jody Lyneé Madeira’s recently published investigation of what she terms the “infertility journey,” joins a host of other scholarly works that explore what happens to and around people who opt to use reproductive medicine in an attempt to have children. Madeira’s mixed-method research approach has yielded in-depth material on how people make decisions under stress about their treatment, as well as revealing overarching themes regarding the patient-physician relationship and the attitudes and behaviors of women and couples as they undergo assisted reproduction. It also provides essential insights concerning the informed consent process.
The bulk of the book is made up of an in-depth analysis of how patients and physicians conceive of themselves before, during, and after the IVF journey. The book offers a high degree of nuance and detail thanks to extensive one-on-one interviews and surveys of both patients and assisted reproduction physicians, mental health professionals, and clinic staffers that Madeira carried out over the course of three years, supplemented by an online survey of 267 individuals who had recently undergone IVF.
Very few facile binaries inform Madeira’s analysis; instead she endeavors to elucidate the multiple, shifting, and often contradictory thoughts and feelings that patients and fertility specialists experience. Drawing on her own history as an IVF patient, she puts forward a model of the quest to overcome infertility as a collaboration that unfolds against “a backdrop of social norms, cultural attitudes, and market forces.” Given the built-in odds against conception using IVF, Madeira casts the central issue within the field as interpersonal trust, which for an optimal collaboration must be “thick,” that is, “grounded in strong and supportive personal relationships.” In this regard, much of Madeira’s interview material can be viewed as an interrogation of the extent to which her subjects experienced “thick trust” with their IVF providers.
Madeira endeavors to dispel a key stereotype she says dominates media accounts and public discourse about women who undertake infertility treatment: that they are “desperate” and therefore incapable of sound decision-making. She makes the well-founded case that emotion is not necessarily antithetical to rationality, and that women and couples under duress because of their infertility treatments are not necessarily incapable of making reasonable decisions. This should go without saying, of course, but does need saying because of the centuries-long charge about women’s inherent irrationality.
That said, I am not sure I fully buy her assertion that the primary cultural understanding of women who seek IVF is that they are desperate. Madeira writes:
For decades, many have used the term “desperate” to describe individuals caught up in conceiving. …The “desperate” label has become highly politicized, used to create (or have the effect of creating) a power relationship, in which individuals experiencing infertility are subordinate to others, most often medical professionals….Unsurprisingly, it is a label almost exclusively applied to females, like the ‘hysteria’ diagnosis used to marginalize women in the nineteenth and early twentieth centuries. [p. 50]
Having followed assisted reproduction almost from its inception, my impression is that desperation may have been a common label in the early years of IVF, along with the framing of the doctors who perform IVF as “miracle workers,” but that the term is not frequently used today. Just as a quick test, after reading Madeira’s second chapter, I did a LexisNexis search of English-language newspaper coverage from January 1988 to January 2018. A search for “IVF patient*” yielded 1293 stories; a search within those results for “desperat*” produced only 106 stories, about 8 per cent, that used the words desperate, desperation, or desperately. Of that group, 19 stories used the word(s) in contexts not having to do with women and their emotional state (e.g., “eggs in desperately short supply,” “programs desperate for donors,” “doctors desperate not to undermine confidence in IVF”). Thirty-six stories used the words in the context of couples, with a few referring to “desperate fathers” alone. So, only about half of the 106 stories, 51, used “desperate” to categorize women. That’s just shy of 4% of the total, which suggests to me that desperation is not as prevalent a characterization as Madeira makes it out to be.
The investigation of informed consent is probably Taking Baby Steps’ most important contribution. In the chapter titled “Is Informed Consent in Critical Condition?” Madeira looks at consent in terms of “its constituent parts of documents (rituals) and conversations,” recognizing that consent-as-ritual has legal, epistemic, and emotional shortcomings. Physicians can be governed by varying definitions of what constitutes disclosure of risk; patients can get tangled up in legalese and medical jargon; and the process of consent can lead, if not handled adroitly, to an erosion of trust between patients and physicians that may negatively impact their relationship during the course of treatment.
At the worst, patients who skim consent forms, viewing them as mere bureaucratic barriers, may have little legal recourse if things go horribly wrong; at best, they set themselves up for less grounded choices as treatment proceeds. Among Madeira’s study subjects, “95% took forms seriously,” while “45% said they were something to get out of the way.” So even when they understood the importance of consent documents, many rushed through them, especially if their doctors had not taken the time to discuss the documents with them beforehand. Many patients viewed the documents as benefitting doctors more than themselves. As one patient told Madeira, “They’re afraid of getting sued, and so they need something to say, ‘No, we told him the risks, and he signed off on them.’”
Physicians, meanwhile, may shorten forms in hopes of reaching patients concisely, but sacrifice important content. In viewing consent as educational, they may consider that their job is adequately done once they convey the information to patients, without recognizing that patients may not have fully comprehended the fine points. Many fertility clinic staffers told Madeira that multiple elements are critical to consent, including educating patients, allowing them to ask questions, giving them time to digest information and emotionally process it. At what point in the treatment cycle, where, and by whom patients were informed varied widely, Madeira found, and, on the whole, consent was viewed as highly problematic by both patients and physicians:
[P]erceptions of the informed consent project, and in particular informed-consent-as-ritual, are suffused with tensions—between medical and legal safeguards, trusting and adversarial relations, informality and formality, comprehensibility and thoroughness, comprehension and time constraints, and current optimism and potentially troubled futures. [p. 225]
Madeira leans toward a more robust consent process that partakes of the larger trust-building relationship between patients and providers. This means that consent becomes integrated across the entire trajectory of treatment; papers are not just signed, filed away, and forgotten. Her further suggestion is to replace formalistic approaches to consent with innovative ones: “[W]hy not change those elements of informed-consent-as-ritual that don’t seem to work, potentially by swapping documentation for new consent technologies, like multimedia or e-learning applications.”
Madeira has made important contributions with this considered and complex analysis, which makes University of California Press’s selection of a mawkish, heteronormative cover illustration all the more unfortunate. Several colleagues and friends who saw me carrying the book thought I was reading “a cheesy romance novel.” Madeira’s research deserved much better.