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In this paper, I reflect on an important article by Bob Veatch in the inaugural issue of the Hastings Center Report, entitled "Experimental Pregnancy." It is a report and elegant analysis of the Goldzieher Study, in which nearly 400 women were randomized to receive hormonal contraception or placebo absent consent or disclosure about placebo use, resulting in several pregnancies. Noting the study's limited notoriety, I first consider the narratives that have instead dominated bioethics' approach to pregnancy and research: thalidomide and diethylstibesterol (DES). These narratives have facilitated a narrow focus on avoiding fetal risk, to the exclusion of other ethically relevant considerations. I then revisit "Experimental Pregnancy" and offer two ways in which Bob's analysis serves as an important corrective, first, by foregrounding research subjects (persons who are or may become pregnant), and second, by normalizing pregnancy and thus foregrounding foundational ethical considerations that are sometimes lost amidst pregnancy's presumed exceptionalism.

OBJECTIVE Fetal tissue research has driven significant medical advances but remains publicly contentious in the United States. The views of pregnant individuals in the United States regarding the donation of fetal tissue offer an important and previously unexplored perspective on this issue. METHODS We conducted a secondary analysis of data from two separate, broader qualitative studies. Pregnant and recently pregnant individuals (N=79) from clinical sites at the University of North Carolina at Chapel Hill, Johns Hopkins University, and Massachusetts General Hospital were interviewed individually using a semi-structured guide addressing a range of issues related to infectious disease research and pregnancy, including the acceptability of fetal tissue research. Interviews were transcribed, coded, and analyzed for emergent themes. RESULTS Among this sample of predominantly Black (61%), reproductive-aged pregnant and recently pregnant participants, the majority (72%) generally supported fetal tissue research. The following three themes were identified: choice, respect, and meaning. Respondents discussed the deeply personal nature of decisions surrounding fetal tissue research, emphasizing the importance of informed consent and respect for the person's emotional state when approaching for consent. The ways in which participants regarded how to respectfully handle fetal tissue also shaped views about the acceptability of donation, both for and against. For many participants, fetal tissue donation to research represented one way of ascribing meaning to pregnancy termination or loss. CONCLUSION Among this diverse sample of pregnant and recently pregnant individuals, most were supportive of fetal tissue donation for research. A better understanding of pregnant individuals' views on this topic may lead to policies and practices that are congruent with the needs and values of people facing decisions regarding the disposition of fetal remains.

While pregnant people are among those most in need of access to effective treatment and preventive drugs and vaccines, evidence to inform use of pharmaceuticals in pregnancy is sorely lacking. Recent years have seen growing recognition of the urgent need to increase responsible research in pregnancy. This chapter outlines the state of play on key issues regarding such research. First, it describes evidence gaps, their systemic causes, and their human and moral costs. Next, it addresses conditions under which pregnant people may ethically be included in studies, highlighting issues of allowable risk, consent, and abortion. Finally, it turns to the important issue of fair inclusion of pregnant participants in research, at the levels of both agenda-setting structures and individual trials. Together these considerations point to the collective responsibility of the global research community to identify and pursue research that meets the needs and honors the interests of pregnant people.

Objectives Communicating with parents about adverse birth outcomes is challenging. We sought to describe attitudes and experiences of parents and providers regarding communication about adverse newborn birth events. Methods From 2011–2012, we conducted semi-structured in-depth interviews with parents who believed they had experienced an adverse birth-related neonatal outcome and focus groups with healthcare providers who have communicated with parents about adverse newborn birth events from three geographically diverse US academic medical centers. We conducted qualitative thematic analysis to identify key themes. Results Parents and providers described unique communication challenges around adverse neonatal outcomes in six categories: 1) High expectations for a positive delivery experience and the view that birth is a life event, not a medical encounter; 2) Powerful emotions associated with birth, amplified when an adverse event occurs; 3) Rapid changes when expectations for a normal birth take a sudden negative turn; 4) Family involvement adding complexity to communication; 5) Multiple patients and providers complicating communication dynamics with inter-professional teams seeking to coordinate information and care; and, 6) Concerns about litigation surrounding the birth experience. Strategies to educate parents and enhance communication were identified by both parents and providers. Conclusion Both parents and providers experience – and may suffer as a result of – communication challenges following adverse birth events affecting the newborn. Training and resources for this care environment are needed to meet parental, extended family, and provider expectations for communication when these events occur.

Pregnant people's exclusion from COVID-19 vaccine research highlights both the harms of excluding pregnant people from clinical trials and the growing public support for their equitable inclusion. Protectionary tendencies must be challenged for the sake of progress. The COVID-19 pandemic presents an opportunity to translate recognition of an unjust paradigm into action.

The increased risk of harm from COVID-19 infection in pregnancy highlights the importance of including pregnant people in COVID-19 vaccine development and deployment. Promising vaccines being developed include replication-competent platforms, which are typically contraindicated during pregnancy because of theoretical risk. However, replicating vaccines are administered in and around pregnancy, either inadvertently because of unknown pregnancy status or when recommended. The historical cases of Ebola virus, yellow fever, and rubella demonstrate that contradictory messages around the safety of live vaccines in pregnancy have critical public health costs. First, restricting study or use of replicating vaccines in pregnancy may delay or deny access to the only available protection against deadly diseases. Additionally, not vaccinating pregnant people may slow epidemic control. Finally, uncertainty and worry around the safety of live vaccines may lead to terminations of otherwise desired pregnancies after inadvertent vaccination in pregnancy. If one of the vaccines deployed to combat the current global COVID-19 pandemic is replication competent, historical cases offer important lessons for ethical and effective protection for pregnant populations.

Prenatal ultrasound use is skyrocketing despite limited evidence of improved outcomes. One factor driving this trend is the widely recognized psychological appeal of real-time fetal imaging. Meanwhile, considering imperfect safety evidence, U.S. professional guidelines dictate that prenatal ultrasound—a screening test—should be governed by expected clinical benefits—an opportunity for intervention. However, when women’s healthcare professionals themselves are pregnant, their access to ultrasound technology permits informal, personal use that may deviate from standard-of-care, e.g., for reassurance. Highlighting a poignant case wherein a pregnant obstetrician’s personal ultrasound use had unforeseen negative consequences, we explore this issue within context of professional ethics and informal medical care. We discuss how women’s health professionals’ self-care may influence and inform prenatal care at large. We advocate curtailing informal prenatal ultrasound use, but also potentially broadening accepted indications for or relaxing proscriptions against ultrasounds for patients. Further research and updated, evidence-based, ethically-sound guidelines are needed.

Introduction Despite historical exclusion, there has been recent recognition of the need to address the health of pregnant women in research on vaccines against emerging pathogens. However, pregnant women’s views and decision-making processes about vaccine research participation during infectious disease outbreaks remain underexplored. This study aims to examine women’s decision-making processes around vaccine research participation during infectious disease outbreaks. Methods We conducted qualitative semi-structured in-depth interviews with pregnant and recently pregnant women (n = 13), eliciting their views on four hypothetical Zika Virus vaccine research scenarios and probing their decision-making processes around participation. After recorded interviews were transcribed, thematic analysis was conducted based on a priori and emergent themes. Results Most women interviewed were accepting of vaccine research scenarios. Three broad themes—evidence, risk, and trust—characterized women’s decision-making processes. Women varied in how different types and levels of evidence impacted their considerations, which risks were most salient to their decision-making processes, and from whom they trusted recommendations about vaccine research participation. Exemplary quotes from each theme are presented, and lessons for vaccine development during the current COVID-19 pandemic and future outbreaks are discussed. Conclusion Some pregnant women are accepting of participation in vaccine research during infectious disease outbreaks. Incorporating their priorities into trial design may facilitate their participation and generation of evidence for this important population.

Despite great need for improved understanding of the use of drugs and biological products in pregnancy, clinical trials in pregnancy are rare, therapeutics in pregnancy are woefully understudied, and pregnant individuals are routinely excluded as trial participants. Recently, however, the U.S. Food and Drug Administration (FDA) has signaled strong support for advancing scientific research with pregnant populations, marking a significant shift from the past. Over the last sixty years, precaution and fear have largely characterized clinical research in pregnancy, deriving in large part from a protectionist ethic that materialized after the thalidomide drug disaster. FDA reviewer Frances Kelsey courageously prevented thalidomide from being marketed in the United States, and her work guided and solidified the FDA's image as protector of the general population from unsafe and ineffective drugs. Yet, when it comes to protection, pregnant persons have been left behind, and experts refer to the "shadows of thalidomide" that hamper clinical trials in pregnancy. Drawing on analysis of Frances Kelsey's archived papers in addition to focused media coverage of Kelsey and thalidomide, we discuss the durable cultural narrative surrounding Kelsey's important work. We argue that revisiting Kelsey's legacy with attention to themes that have characterized her achievement-staying vigilant, prioritizing safety, and mitigating pharmaceutical-based harm-in fact facilitates progress toward the ethical obligation to protect pregnant people through research, toward the generation of pregnancy-specific data for evidence-based care, and toward realizing Kelsey's legacy of safeguarding pregnant people and their offspring from the harms of untested drugs.

Delaying Pregnancy during a Public Health Crisis Whether public health agencies should recommend that women avoid becoming pregnant during public health crises like Covid-19 because of potential ri...

ObjectiveTo evaluate associations between prenatal trio exome sequencing (trio-ES) and psychological outcomes among women with an anomalous pregnancy.MethodsTrio-ES study enrolling patients with major fetal anomaly and normal microarray. Women completed self-reported measures and free response interviews at two time points, pre- (1) and post- (2) sequencing. Pre-sequencing responses were compared to post-sequencing responses; post-sequencing responses were stratified by women who received trio-ES results that may explain fetal findings, secondary findings (medically actionable or carrier couple status), or negative results. Free responses were content analyzed.Results115 trios were enrolled. Of those, 41/115 (35.7%) received results from trio-ES, including 36 (31.3%) who received results that may explain the fetal phenotype. These women had greater post-sequencing distress compared to women who received negative results, including generalized distress (p=0.03) and test-related distress (p=0.2); they also had worse psychological adaptation to results (p=0.001). Genomic knowledge did not change from pre- to post-sequencing (p=0.51). Major themes from content analyses included closure, future pregnancy, altruism, anxiety, and gratitude.ConclusionsWomen show more distress after receiving trio-ES results compared to those who do not.

Postpartum contraceptive decision making is complex, and recommendations may be influenced by breastfeeding intentions. While biologically plausible, concerns about the adverse impact of hormonal contraception on breast milk production have not been supported by the clinical evidence to date. However, the data have limitations, which can lead providers with different priorities around contraception and breastfeeding to interpret the data in a way that advances their personal priorities. Discrepancies in interpretations can lead to divergent recommendations for individual women and may cause conflict. Furthermore, providers must recognize that decision making about contraception and breastfeeding takes place in complex cultural, historical and socioeconomic contexts. Implicit bias may influence a provider's counseling. Unrecognized biases toward one patient or another, or one practice or another, may influence a provider's counseling. It is crucial for providers to strive to recognize their own biases. Providers need to respectfully recognize each patient's values and preferences regarding hormonal contraception and breastfeeding. Developing a patient-centered decision tool or implementing patient-centered interview techniques specifically around breastfeeding and contraception could help to minimize provider-driven variability in care.

INTRODUCTION: As Zika virus infection during pregnancy can cause a range of congenital anomalies, pregnant women may be a target population for vaccination in future outbreaks. Their inclusion in vaccine trials is critical to ensure safe and effective vaccines in pregnancy. Though many vaccine candidates are in development, pregnant women’s willingness to participate in Zika virus vaccine research is unknown. This study aims to describe pregnant women’s attitudes towards Zika virus vaccine research participation, as well as perceived barriers to and facilitators of enrollment. METHODS: Pregnant and recently postpartum women (n=128) attending prenatal care at Massachusetts General Hospital completed surveys querying their willingness to participate in four hypothetical Zika virus vaccine trials and their motivations for participation. Demographics, information on prior Zika virus exposure, and vaccine acceptance were collected. RESULTS: Most women (77%) accepted participation in at least one hypothetical Zika virus vaccine trial, and women were significantly more likely to accept prospective enrollment in an inactivated vaccine trial compared to a live-attenuated vaccine trial (p-value

Background The pressing need to expand the biomedical HIV prevention evidence base during pregnancy is now increasingly recognized. Women’s views regarding participation in such trials and initiating PrEP while pregnant are critical to inform evolving policy and best practices aimed at responsibly expanding evidence-based access for this population. Methods We conducted 35 semi-structured interviews with reproductive-aged women in Malawi in the local language, Chichewa. Participants were HIV-negative and purposively sampled to capture a range of experience with research during pregnancy. Women’s perspectives on enrolling in three hypothetical HIV prevention trial vignettes while pregnant were explored, testing: (1) oral PrEP (Truvada) (2) a vaginal ring (dapivirine), and (3) a randomized trial comparing the two. The vignettes were read aloud to participants and a simple visual was provided. Interviews were audio-recorded, transcribed, translated, and coded using NVivo 11. Thematic analysis informed the analytic approach. Results A majority of women accepted participation in all trials. Women’s views on research participation varied largely based on their assessment of whether participation or nonparticipation would best protect their own health and that of their offspring. Women interested in participating described power dynamics with their partner as fueling their HIV exposure concerns and highlighted health benefits of participation—principally, HIV protection and access to testing/treatment and ancillary care, and perceived potential risks of the vignettes as low. Women who were uninterested in participating highlighted potential maternal and fetal health risks of the trial, challenges of justifying prevention use to their partner, and raised some modality-specific concerns. Women also described ways their social networks, sense of altruism and adherence requirements would influence participation decisions. Conclusions The majority of participants conveyed strong interest in participating in biomedical HIV prevention research during pregnancy, largely motivated by a desire to protect themselves and their offspring. Our results are consistent with other studies that found high acceptance of HIV prevention products during pregnancy, and support the current direction of HIV research policies and practices that are increasingly aimed at protecting the health of pregnant women and their offspring through responsible research, rather than defaulting to their exclusion.

Despite progress in representing various populations in clinical research, one group has been left behind: pregnant women. Though millions of pregnant women annually need to use medication, whether to treat chronic illness or prevent infectious disease, pregnant women have been systematically excluded from the social investment in clinical research required to generate evidence to inform their care. This chapter articulates three models that have been advanced for morally framing research with pregnant women: an unfettered protectionist model, in which pregnant women are categorized as a “vulnerable population” for purposes of clinical research; a model of unrestricted deference to the pregnant woman’s autonomy; and a model that construes the fetus as a pediatric research subject. Each, it is argued, is critically flawed. With lessons learned from their respective limitations, the chapter points toward ways in which research during pregnancy must be given unique consideration, and toward development of an adequate framework.

Childbirth is often understood as a paradigmatically "happy" event where good outcomes are expected and the process anticipated as a reason for celebration. Yet the narratives in this volume reflect sadness and grief, even when a healthy child is born. In this essay, I interrogate the genesis of and our relationship to grief in birth. To the extent such grief is a product of the chasm between the imagined ideal and what women experience, we may redress such grief by orienting around a more robust and woman-centered notion of the "good birth". Yet there is a way in which grief is also intrinsic to birth, and turning away from the loss that birth by its nature entails may compound the suffering of childbearing women. Beginning with the observation that the one narrative in which grief is accepted and attended to-a full term stillbirth-also stands out for the exemplary care provided, I consider the possibility that making space for grief in births, including those with good outcomes, will lead us to better ways of thinking about birth and providing care for childbearing women.

Advancing fair access to evidence-based pregnancy-related services is a critical public health priority. It is widely recognized that there are inequalities in lifesaving interventions. This chapter however addresses issues raised by services whose value or utility are contested. Using illustrative examples of prenatal genetic testing and modes of childbirth, the chapter highlights the ways in which issues of access are complicated by social and cultural ideas about what is valued; discusses contested questions about what is ethically responsible or required of patients, providers, and public health systems in these reproductive health contexts; and addresses areas of needed research and further ethical analysis. It concludes that issues of access in pregnancy-related care must attend both to broad issues of justice and access and to particular ways that pregnancy services are valued, debated, and made available to women who might—or might not—benefit from them.

Background: Since the early 1990s, the HIV research agenda has prioritized to some degree the inclusion of pregnant women. However, concerns remain regarding the extent to which pregnant women's own health needs are addressed, representation in trials of HIV preventives or treatments for comorbidities, and equitable study of newer medications during pregnancy. Methods: We employed a keyword search of the International Clinical Trials Registry Platform to identify interventional HIV-related trials conducted with pregnant women between January 2001 and December 2015. Retained trials were coded according to several key variables (e.g., study endpoints, trial phase, study compound) and analyzed using information provided in the database. Results: In total, 63 trials studying use of a pharmacological compound during pregnancy were conducted across 35 countries and sponsored by 74 unique organizations, including pharmaceutical companies. Of trials analyzed, 86% (n = 54) listed maternal outcomes as a primary endpoint. More than 35% (n = 23) of trials assessed pharmacokinetic parameters of a study compound during pregnancy. Of 45 trials specifically studying HIV-related medication(s), just 4% (n = 2) focused on HIV preventives. One trial studied tuberculosis in HIV-infected pregnant women; 11 studied malaria. On average, medications were studied during pregnancy 4.4 years after licensure. Conclusions: Our findings demonstrate that trials with pregnant women are conducted across a range of countries and sponsors, and much progress has been made to better address pregnant women's own health needs in HIV research. However, our findings confirm other concerns, for example, lack of HIV preventives studied and the lag between medication licensure and study during pregnancy.

While the concept of conscience has broad philosophical underpinnings relating to moral judgment, agency, and discernments of right and wrong, debates in bioethics have tended to engage the concept primarily vis-à-vis rights of conscientious refusal. Here, we suggest a broader frame for thinking about claims of conscience in healthcare. Drawing on empirical findings from our research with abortion providers in North Carolina, we elucidate an empirically grounded approach to ethically justified care when healthcare providers face legal or institutional policy mandates that raise possible moral conflicts. We highlight, in particular, how providers may be motivated by matters of conscience, including relational concerns, in the active provision of certain forms of care. In so doing, we challenge the dichotomy between conscientious refusal and morally compromised action, demonstrating how providers may work within the constraints of laws or institutional policies that raise moral challenges and act in accordance with conscience.

Though many women in need of access to HIV preventive regimes are pregnant, there is a dearth of data to guide these care decisions. While oral pre-exposure prophylaxis (PrEP) has been shown to prevent HIV infection in numerous high-risk populations, pregnant women have been excluded from all major prospective trials. We propose for ethical examination a theoretical trial—a prospective, observational study of PrEP for pregnant women at risk for HIV in sub-Saharan Africa—highlighting an ethical tradeoff that characterizes issues faced for advancing research in pregnancy. On the one hand, an “opportunistic” study design has certain ethical advantages: as formally construed, the research activity usually begins after decisions to use PrEP during pregnancy are made in the clinical setting. This minimizes research risks and avoids ethical problems that a randomized controlled trial (RCT) comparing PrEP to placebo would entail, particularly withholding care proven beneficial in other populations. On the other hand, observational studies yield less precise information than RCTs. This raises a broader question about the pace of research with pregnant women, as it typically takes many years after a drug’s approval for use in the general population to determine safety of the medication in pregnancy. Such delays can have the effect of making it impossible to ethically conduct an RCT with pregnant women, reducing the likelihood that the research community is able to obtain robust, pregnancy-specific evidence. While an observational cohort is potentially the most ethically and scientifically justified research design to study PrEP in pregnancy, earlier involvement of pregnant women in studies of newer preventives may lead to evidence that is more timely and robust.

Laws governing abortion provision are proliferating throughout the United States, yet little is known about how these laws affect providers. We investigated the experiences of abortion providers in North Carolina practicing under the 2011 Women's Right to Know Act, which mandates that women receive counseling with specific, state-prescribed information at least 24 hours prior to an abortion. We focus here on a subset of the data to examine one strategy by which providers worked to minimize moral conflicts generated by the counseling procedure. Drawing on Erving Goffman's work on language and social interaction, we highlight how providers communicated moral objections and layered meanings through a practice that we callWe conducted semi-structured interviews with 31 physicians, nurses, physician assistants, and clinic managers who provide abortion care in North Carolina. Audio-recorded interviews were transcribed verbatim and analyzed using an inductive, iterative analytic approach, which included reading for context, interpretive memo-writing, and focused coding.Roughly half of the participants (14/31) reported that they or the clinicians who performed the counseling in their institution routinely prefaced the counseling script with qualifiers, disclaimers, and apologies that clarified their relationship to the state-mandated content. We identified three performative functions of this practice: 1) enacting a frame shift from a medical to a legal interaction, 2) distancing the speaker from the authorial voice of the counseling script, and 3) creating emotional alignment.Prefacing state-mandated abortion counseling scripts constitutes a practical strategy providers use to balance the obligation to comply with state law with personal and professional responsibilities to provide tailored care, emotional support, and serve the patient's best interests. Our findings suggest that language constitutes a powerful resource for navigating and minimizing moral conflicts in healthcare.

Although pregnant women rely on medical interventions to treat and prevent a wide variety of health conditions, they are frequently excluded or underrepresented in clinical research. The resulting dearth of pregnancy-specific evidence to guide clinical decisionmaking routinely exposes pregnant women, and their future offspring, to risk of uncertain harms for uncertain benefits. The two legal factors regularly cited as obstacles to such research are the federal regulatory scheme and fear of liability. This article reveals a far more nuanced and complex view of the legal context. First, legal professionals may—at any time from product conception to marketing—influence decisions about research with pregnant women. Second, factors not previously articulated in the literature may prompt legal professionals to slow or halt such research. They include: financial interests, regulatory ambiguity, obstacles to risk management, and site-specific laws unrelated to research. Any efforts to promote the ethical inclusion of pregnant women in research must acknowledge the role of legal decisionmakers and address their professional concerns.

Krause and Gruber offer the U.S. Food and Drug Administration (FDA) as part of the solution to the problems we have identified. We agree that the FDA could helpfully assist with the review of specific protocols for Zika human challenge trials (HCTs), especially given the need to update our panel's

Two critical, recurring questions can arise in many areas of research with human subjects but are poorly addressed in much existing research regulation and ethics oversight: How should research risks to “bystanders” be addressed? And how should research be evaluated when risks are substantial but not offset by direct benefit to participants, and the benefit to society (“social value”) is context-dependent? We encountered these issues while serving on a multidisciplinary, independent expert panel charged with addressing whether human challenge trials (HCTs) in which healthy volunteers would be deliberately infected with Zika virus could be ethically justified ( 1 ). Based on our experience on that panel, which concluded that there was insufficient value to justify a Zika HCT at the time of our report, we propose a new review mechanism to preemptively address issues of bystander risk and contingent social value.

Disclosing harmful medical errors to patients is a prominent component of the patient safety movement. Patients expect it and safety agencies and experts advocate its implementation. Obstetrics presents unique challenges to carrying out disclosure recommendations: childbirth is a life-changing, emotionally charged, and dynamic family event characterized by high expectations and unpredictability, and perinatal care is provided by complex ad hoc teams in a litigious area of medicine. Despite these challenges, transparent communication with parents about unexpected adverse birth outcomes remains critical. We call on clinicians and professional societies to pursue a deeper understanding of the unique challenges of disclosure in obstetrics and prepare themselves to conduct these difficult conversations well.

Medical professionals do not have the right to curtail patients' knowledge or exploit its limits to further their moral worldviews. Because patients lack medical information and don't know what they don't know, conscientious objectors must still inform patients about all options, including the ones they won't participate in.

PurposeWe investigated the diagnostic and clinical performance of exome sequencing in fetuses with sonographic abnormalities with normal karyotype and microarray and, in some cases, normal gene-specific sequencing.MethodsExome sequencing was performed on DNA from 15 anomalous fetuses and from the peripheral blood of their parents. Parents provided consent to be informed of diagnostic results in the fetus, medically actionable findings in the parents, and their identification as carrier couples for significant autosomal recessive conditions. We assessed the perceptions and understanding of exome sequencing using mixed methods in 15 mother-father dyads.ResultsIn seven (47%) of 15 fetuses, exome sequencing provided a diagnosis or possible diagnosis with identification of variants in the following genes: COL1A1, MUSK, KCTD1, RTTN, TMEM67, PIEZO1 and DYNC2H1. One additional case revealed a de novo nonsense mutation in a novel candidate gene (MAP4K4). The perceived likelihood that exome sequencing would explain the results (5.2 on a 10-point scale) was higher than the approximately 30% diagnostic yield discussed in pretest counseling.ConclusionExome sequencing had diagnostic utility in a highly select population of fetuses where a genetic diagnosis was highly suspected. Challenges related to genetics literacy and variant interpretation must be addressed by highly tailored pre- and posttest genetic counseling.

Judgments about risk of harm raise issues of profound moral significance. This chapter criticizes prevailing assumptions about risk management in pregnancy. While bioethicists tend to focus on beneficence when analyzing issues of risk, beneficence does not exhaust the moral significance of risk and judgments about risk also raise issues of social justice. The chapter begins by highlighting criteria for adequate understanding of social justice as transcending the distribution of harms and benefits standardly thought to constitute justice. The chapter then considers how culture shapes the normative significance of risk: how we think about risk, what measures we feel justified taking to manage risks, whose interests are promoted by various approaches to risk, whom we hold responsible and for what. Moving beyond criticism, reforms of cultural attitudes toward pregnancy and its management are proposed and recent claims that “fetal origins” research provides a basis for such reform are assessed. This chapter argues that recognition of the significance of social determinants of health plays a critical role in transforming the management of risk in pregnancy. Overall, the analysis engages foundational philosophical questions about the nature of social justice in concert with attention to cultural context.

To describe obstetrician-gynecologists' (ob-gyns') views and willingness to help women seeking abortion in a variety of clinical scenarios.We conducted a mailed survey of 1,800 U.S. ob-gyns. We presented seven scenarios in which patients sought abortions. For each, respondents indicated if they morally objected to abortion and if they would help patients obtain an abortion. We analyzed predictors of objection and assistance.The response rate was 66%. Objection to abortion ranged from 16% (cardiopulmonary disease) to 82% (sex selection); willingness to assist ranged from 64% (sex selection) to 93% (cardiopulmonary disease). Excluding sex selection, objection was less likely among ob-gyns who were female (odds ratio [OR] 0.5, 95% confidence interval [CI] 0.4-0.8), urban (OR 0.3, 95% CI 0.1-0.7), or Jewish (OR 0.3, 95% CI 0.1-0.7) compared with male, rural, or religiously unaffiliated ob-gyns. Objection was more likely among ob-gyns from the South (OR 1.9, 95% CI 1.2-3.0) or Midwest (OR 1.9, 95% CI 1.2-3.1), and among Catholic, Evangelical Protestant, or Muslim ob-gyns, or those for whom religion was most important, compared with reference. Among ob-gyns who objected to abortion in a given case, approximately two-thirds would help patients obtain an abortion. Excluding sex selection, assistance despite objection was more likely among female (OR 1.8, 95% CI 1.1-2.9) and United States-born ob-gyns (OR 2.2, 95% CI 1.1-4.7) and less likely among southern ob-gyns (OR 0.3, 95% CI 0.2-0.6) or those for whom religion was most important (OR 0.3, 95% CI 0.1-0.7).Most ob-gyns help patients obtain an abortion even when they morally object to abortion in that case. Willingness to assist varies by clinical context and physician characteristics.II.

Childbearing women, healthcare providers, and commentators on birth broadly identify control as an important issue during childbirth; however, control is rarely defined in literature on the topic. Here we seek to deconstruct the term control as used by childbearing women to better understand the issues and concepts underpinning it. Based on qualitative interviews with 101 parous women in the United States, we analyze meanings of control within the context of birth narratives. We find these meanings correspond to five distinct domains: self-determination, respect, personal security, attachment, and knowledge. We also find ambivalence about this term and concept, in that half our sample recognizes "you cannot control birth". Together, these findings call into question the usefulness of the term for measuring quality or improving maternity care and highlight other concepts which may be more fruitfully explored.

Objective To describe fertility patients' preferences for disposition of cryopreserved embryos and determine factors important to these preferences. Design Cross-sectional survey conducted between June 2006 and July 2007. Setting Nine geographically diverse U.S. fertility clinics. Patient(s) 1020 fertility patients with cryopreserved embryos. Intervention(s) Self-administered questionnaire. Main Outcome Measure(s) Likelihood of selecting each of five conventional embryo disposition options: store for reproduction, thaw and discard, donate to another couple, freeze indefinitely, and donate for research; likelihood of selecting each of two alternative options identified in previous research: placement of embryos in the woman's body at an infertile time, or a disposal ceremony; importance of each of 26 considerations to disposition decisions; and views on the embryo's moral status. Result(s) We found that 54% of respondents with cryopreserved embryos were very likely to use them for reproduction, 21% were very likely to donate for research, 7% or fewer were very likely to choose any other option. Respondents who ascribed high importance to concerns about the health or well-being of the embryo, fetus, or future child were more likely to thaw and discard embryos or freeze them indefinitely. Conclusion(s) Fertility patients frequently prefer disposition options that are not available to them or find the available options unacceptable. Restructuring and standardizing the informed consent process and ensuring availability of all disposition options may benefit patients, facilitate disposition decisions, and address problems of long-term storage.