Emerging Ethical Issues in Reproductive Medicine: Are Bioethics Educators Ready? by R uth M. Farrell, Jonathan S. Metca l fe, Miche l l e L . Mc Go wan , Kathry n L. Weise, Patricia K. Agatisa , and Jessica B erg

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ver the past decade, innovative ways to control reproduction, build families, and maintain reproductive health have emerged, sparking controversy and raising key questions about the balance between technological capability and the choices women and men make about their bodies and offspring. While ethical issues are apparent in all fields of medicine, they have a particular salience and complexity in the context of reproductive medicine.1 In fact, ethical concerns associated with reproductive medicine have been at the forefront of bioethics and played a key role in the development of this field.2 Fundamental ideas about women, men, children, and families become enmeshed with individual and social values that provoke both private and public debate.3 In particular, advances in genetics and genomics, while leading to new understandings of human disease and technologies that can potentially be translated into the clinical setting, have also altered previously established conceptions of reproduction and family.4 Advocates for the professionalization of clinical bioethics argue that bioethics professionals play an important role in contemporary medicine and patient care, especially when addressing complex ethical questions that arise in the delivery of reproductive medicine.5 In fact, The Joint Commission requires all hospitals to provide support in the resolution of clinical ethics issues. For bioethics consultants to serve effectively, they need adequate training in the medical and ethical issues that patients and clinicians will face, and they need skills to facilitate effective dialog among all parties.6 Because clinical ethics consultation is a “high-stakes endeavor” that can acutely affect patient care,7 efforts are under way to ensure that bioethics consultants have the competence to provide such guidance.8 Yet to date, no studies have examined whether the training of bioethics consultants meets the needs of health care professionals who are on the front lines of such Ruth M. Farrell, Jonathan S. Metcalfe, Michelle L. McGowan, Kathryn L. Weise, Patricia K. Agatisa, and Jessica Berg, “Emerging Ethical Issues in Reproductive Medicine: Are Bioethics Educators Ready?” Hastings Center Report 44, no. 5 (2014): 21-29. DOI: 10.1002/hast.354

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issues. In fact, limited information is available on the reproductive health issues that bioethics training programs address or the degree to which these programs meet the needs of patients confronting reproductive health decisions and their clinicians. It is therefore important to answer this key question: What are the primary ethical issues encountered in reproductive medicine that currently affect patient care? Equally important, are bioethics training programs prepared to address those issues? To begin to answer these questions, we conducted parallel surveys of directors of graduate bioethics training programs and obstetrician-gynecologists. The goal of this project is to lay the groundwork to establish a working partnership between bioethics educators and reproductive medicine practitioners to address the often troubling and frequently complex ethical issues in reproductive medicine. Methods

Study populations. We utilized a cross-sectional survey design to sample two specific populations: bioethics educators, comprising individuals in the field of bioethics involved in the development of graduate-level bioethics training curricula in North America, and physicians, comprising obstetrician-gynecologists delivering reproductive health care in the United States. Bioethics training program directors were recruited using a purposive sampling strategy to identify individuals who were involved in graduate-level bioethics training programs in North America and who had the greatest knowledge and influence in their respective training programs. These individuals were identified through various bioethics association lists and literature, as well as through an extensive web search of bioethics training programs in the United States and Canada, as follows. First, bioethics centers, institutes, departments, and other organizations devoted to bioethics education were identified; then, the program director, program chair, or director of education was identified. A database was H AS TI N GS C EN TE R RE P O RT

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compiled with information about each program, including degrees offered and curriculum devoted to reproductive and genetic medicine. A total of ninety-six programs were identified (ninety in the United States and six in Canada). Inclusion criteria stipulated that only programs that offered some type of formalized education in bioethics leading to a graduate degree or graduate certificate or taking the form of postdoctoral training were eligible. Based on direct contact from prospective participants and further program research, twenty-seven programs were determined to be ineligible and were subsequently removed from the database. Our final database contained sixty-nine bioethics training programs (sixty-six in the United States and three in Canada). The database was subsequently used to identify candidate bioethics training program directors for recruitment in the study. Obstetrician-gynecologists were identified using the American Medical Association Physician Masterfile. We targeted board-certified generalist obstetrician-gynecologists who currently practice reproductive medicine. One thousand two hundred physicians were randomly selected from this list; they represent a diverse sample of reproductive health physicians. Survey development. A survey instrument was developed to elicit data from bioethics educators in four domains: information about the program (including the program’s current approach and goals for bioethics training); information about the respondent, such as her or his own training in bioethics and role in education; opinions about the importance of particular ethical issues related to reproduction, reproductive health care, and bioethics training; and coverage of these topics in the curricula. While emphasis was placed on women’s health issues, some reproductive issues pertaining to men were included. To characterize the content of bioethics training programs pertaining to reproductive ethics, participants were presented with a series of reproductive ethics issues and asked to choose which they thought should be a part of bioethics training curriculum and what was included in the curriculum of their program. The series included the following topics: assisted reproductive technologies, childbirth, conscientious objection, family planning, fertility preservation, infectious disease, maternal-fetal interventions, menopausal health, preconception genetic testing, pregnancy termination, prenatal testing, reproductive health law, sexuality, and theoretical concepts of reproductive ethics. Examples of specific topics were provided for each issue. Questions were developed through a deductive process based on information from the literature,9 along with input from content experts in bioethics and reproductive medicine. Participants were also presented with a series of open-ended items to allow them to identify which leading ethical issues they thought would emerge with current advances in reproductive technologies and what strategies should be developed to adequately train bioethics consultants to meet those challenges. Pilot testing and cognitive interviewing (i.e., feedback elicited on the context and structure of the instrument) was used to create the 22 HASTI N G S C E N T E R R E P ORT

final instrument for field use. The final survey was generated in a web-based format using Qualtrics Research Suite. The survey developed for the physicians was constructed in a similar manner, based on a study by Gordon DuVal et al. that examined clinical ethical issues experienced by internal medicine physicians.10 Our survey was designed to identify which issues in reproductive health care providers considered to be the leading ethical issues based on their clinical experiences. To allow for direct comparisons, the physicians’ survey contained a series of closed-ended questions identical to the ones contained in the survey sent to bioethics training program directors. Data collection. Bioethics training program directors were sent an introductory letter, via email, that contained information about the study. Within forty-eight hours, another letter, with a link to the web-based survey, was sent as well. Participants who did not complete the survey within two weeks were sent a follow-up email. One week later, paper surveys were mailed to participants who had not yet returned the web-based survey. Participants were asked to complete the paper survey and then return it to the investigators in a stamped envelope. Physicians who met inclusion criteria were sent a recruitment cover letter and paper copy of the survey. A paper survey was used for this survey because individual email addresses were not available. Participants were asked to complete the survey and return it in a self-addressed, stamped envelope. Analysis. Quantitative data was analyzed using SPSS version 18.0. Categorical variables were summarized by frequency and percentages. Testing of differences between groups (gender, age, and participant group) was performed using Pearson’s chi-square test and Fisher’s exact test. Significance for all analyses was determined by a p-value less than or equal to 0.05. Qualitative data was analyzed using thematic analysis.11 In order to minimize bias, data were coded by two researchers independently and then compared. Prevalent themes were identified and compared again until consensus was reached about the leading themes relevant to emerging ethical issues and the changes needed in bioethics to address them. Results

Characteristics of bioethics educators who participated in the study. Of the ninety-six surveys distributed to bioethics program training directors, twenty-seven were ineligible because their programs did not grant a degree or certificate. Among the sixty-nine eligible programs, fifty-three surveys were initiated, and thirty-nine were sufficiently completed for analysis. Most respondents (76.3 percent) held either a leadership position within the department (department chair or bioethics training program director) or were part of the core faculty; 23.7 percent were department administrators. More than half of the bioethics program directors who participated in the study (61.5 percent) were male. The majority were fifty years of age or older. Most had a doctor of September-October 2014

For ten out of twelve categories, there was a significant difference between the priority assigned by bioethics respondents and the frequency with which physician respondents encountered the issue. philosophy degree (62.2 percent), a master’s of arts or science (32.4 percent), or a doctor of medicine degree (27.9 percent). The majority had completed their bioethics training more than ten years earlier (71.9 percent); 28.1 percent had completed training within the past six to ten years. Most of the training programs examined in the study were affiliated with an academic medical center (61 percent), college or university (55 percent), or medical school (41 percent). Only 20 percent of programs were associated with an institution with a religious affiliation. Many of the programs offered master’s (40.0 percent) or certificate (40.0 percent) programs in bioethics; a few offered fellowship (28.9 percent) or doctoral degree programs (13.3 percent; note that the categories are not mutually exclusive). The majority of programs required one to two years to complete. Wide variation was noted in the number of educational hours dedicated to reproductive ethics: approximately two-thirds (65.5 percent) of the programs offered five or more hours of courses on reproductive ethics, and 5.1 percent did not offer any course hours. Those who did offer courses reported a broad spectrum of classroom hours and clinical hours dedicated to issues relating to reproductive ethics (both categories ranging from two to forty hours), although overall, more emphasis was placed on learning in the classroom context. Characteristics of physicians who participated in the study. A total of 1,200 surveys were mailed to physicians, and 142 were sufficiently completed for analysis. Among those physicians who provided demographic information, 40.8 percent were male, 43.0 percent were female, and 16.2 percent declined to provide this information. The majority were between the ages of thirty and fifty-nine. Most surveyed were generalist obstetrician-gynecologists (72.5 percent). Under a third (25.4 percent) had subspecialty training; of these, 38.3 percent had received subspecialty training in reproductive endocrinology and infertility, 30.5 percent in maternal-fetal medicine, 8.3 percent in gynecologic oncology, 8.3 percent in uro-gynecology, and 2.0 percent in infectious diseases. A range of practice settings were represented: 46.4 percent of the physicians surveyed were in a single specialty practice, 23.3 percent in solo practice, and 16.1 percent in academic medical centers. Just over half (59.2 percent) had some educational exposure to bioethics. The most common sources of education in bioethics were grand rounds (28.8 percent), a specific bioethics course or conference (8.5 percent), undergraduate or graduate education in medical ethics (9.0 September-October 2014

percent), and current or previous service on an ethics committee (7.0 percent). Reproductive ethics issues identified as important by bioethics educators. From the list of reproductive ethics topics provided in the survey, bioethics educators identified the following as the top five issues addressed in their programs: assisted reproductive technologies (selected by 60.4 percent of respondents), theoretical concepts in reproductive ethics (selected by 41.5 percent of respondents), pregnancy termination (selected by 43.4 percent of respondents), prenatal testing (including genetic testing, selected by 41.5 percent of respondents), and preconception genetic testing (selected by 37.7 percent of respondents). Other topics considered to be important issues in bioethics training included health care providers’ conscientious objection regarding pregnancy termination and contraception (selected by 34.0 percent of respondents) and maternal-fetal interventions, including research involving pregnant women (selected by 28.3 percent of respondents). Less attention was given to issues related to fertility preservation (selected by 13.2 percent of respondents), sexuality (selected by 11.3 percent of respondents), contraception (selected by 11.3 percent of respondents), infectious diseases (selected by 9.4 percent of respondents), and childbirth (selected by 7.5 percent of respondents). None of the programs addressed ethical issues related to menopause or menopausal health. There was concordance between the priorities identified and the content offered within each program. No group differences correlated with the age or gender of the program director. Reproductive ethics issues identified as important by physicians. When physician participants were presented with the same list of reproductive ethics topics, they identified the top five leading ethical issues faced in clinical practice as follows: pregnancy termination (selected by 70.4 percent of respondents), prenatal testing (selected by 43.5 percent of respondents), assisted reproductive technologies (selected by 35.9 percent of respondents), sexuality (selected by 30.3 percent of respondents), and contraception (selected by 31.0 percent of respondents). No differences by age or gender were noted. Differences between bioethics training programs and physician experience. When physician responses were compared with those of bioethics program directors, a striking finding was noted. For ten out of the twelve categories, there was a significant difference between the priority assigned to ethical issues by bioethics respondents and the frequency with which physician respondents encountered the issue (figure 1). For H AS TI N GS C EN TE R RE P O RT

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most categories, bioethics respondents gave low priority to ethical issues that physician respondents encountered more frequently. Physicians were more concerned than bioethics educators about abortion, childbirth, contraception, infectious disease, menopausal health, and sexuality. In contrast, bioethics educators significantly gave higher priority to issues that physician respondents encountered less frequently in clinical practice. The bioethicists focused on assisted reproductive technologies, conscientious objection, preconception genetic testing, and maternal-fetal interventions, although the difference between the groups on the last issue was less marked and did not reach statistical significance. There were only two categories where responses of the two groups of participants were in close alignment: fertility preservation and prenatal testing. Emerging trends identified by bioethics educators. Thematic analysis of qualitative data from the bioethics educators’ surveys revealed five key domains that bioethics educators thought would emerge in the next five to ten years: genetic and genomic technologies, assisted reproductive technologies, access to health care, abortion and the limits of viability, and the relationship between bioethical issues and clinical practice. Challenges related to technologies were the most frequently reported issue. This category included the impact and ramifications of whole genome sequencing, eugenic implications of the use of genetic technologies, and prenatal genetic testing. Whole genome sequencing (including sequencing of fetuses and newborns) was regarded as a particular concern. Related to this, bioethics educators also considered increased utilization of assisted reproductive technologies and the redefinition of families as specific challenges to anticipate. Concepts within this domain included reproduction within same-sex couples, health policy and regulations relating to assisted reproductive technologies, and ethical issues related to the storage and disposition of frozen gametes and embryos. The bioethicists predicted that many additional questions will be raised as conceptualizations of families shift with continuing changes in technology and social mores. Regarding access to health care, responses encompassed a wide range of political, economic, and social factors, with specific concerns about women’s access to advancing technology and new reproductive technologies. Bioethics participants also raised the concern that perhaps too much attention was given in bioethics training to advancing technologies and that this in turn limited the resources allocated to bioethical issues in primary and preventive care. Bioethics educators remarked on how issues related to abortion and viability, which dominate much of the current bioethics discourse, will likely become even more significant in years to come. Specifically, participants noted an emerging connection between issues related to abortion, maternal-fetal interventions, and the shifting of the threshold of viability to earlier gestational age. With the possibility of viability at earlier gestational ages, participants foresaw medical and legal questions about 24 HASTI N G S C E N T E R R E P ORT

obligations to pregnant women, fetuses, and premature newborns and about the timing of abortion. The issue of health care providers’ conscientious objection was raised, with the added nuance of physicians’ having to navigate issues of conscience in light of the emergence of new genetic and reproductive technologies. Bioethics respondents also provided opinions about what changes will have to take place in bioethics training to meet the anticipated challenges. Participants overwhelmingly thought that the discipline should take a broader, multidisciplinary approach in addressing the ethical challenges posed by reproductive medicine. This included working closely with clinicians and researchers to understand “real-world” situations. Beyond macrolevel clinical encounters, bioethics respondents thought it was important to be aware of outside influences, such as commercial enterprises and other financial drivers, as well as the impact of these factors on research and implementation of new reproductive and genetic technologies. Education was another leading theme. Three areas stood out: the need to update curricula with more courses in the science and ethics of reproductive medicine, the need to integrate content expertise into curricula so that trainees can navigate between theoretical frameworks and the practical application of technological advances, and the need to develop consistent standards across programs through accreditation and further professionalization of training programs. Participants noted that both empirical and normative bioethics research will be necessary to ensure that bioethicists are prepared to meet the challenges that arise with emergent reproductive science and technology. Discussion

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ur findings demonstrate the need for increased, bidirectional dialog between bioethics educators and clinicians. We found that there was great divergence in the perspectives and priorities of bioethics educators and physicians. On the one hand, there is a series of issues on which bioethics educators tend to place less emphasis but physicians are more likely to identify as sources of ethical concern. On the other, there is a set of issues that bioethics educators tended to emphasize in graduate training programs but that physicians were less likely to identify as ethically salient. While additional qualitative research is needed to more fully illuminate the reasons for these findings, our own clinical and research experiences can add more context and help explain why there is a divergence of perspectives between physicians and bioethics educators. Issues of importance to obstetrician-gynecologists: difficult decisions in the clinical encounter We identified a series of issues that physicians highlighted as most ethically challenging in their practice but that bioethicists tended to emphasize less: childbirth, infectious disease, contraception, abortion, menopausal health, and sexuality. An overarching theme to these issues pertained to ethical September-October 2014

Figure 1. Comparison of the Perspectives of Bioethics Educators and Physician Participants

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quandaries that arise for physicians when framing reproductive health care choices for patients and responding to patient preferences in the care-planning process. Additionally, there was an underlying tension regarding the challenges of providing health care in a time when social and political factors can have a significant impact on decisions that women make about their reproductive and sexual health. Below, we present a snapshot of some of the formative questions and decisions that clinicians and patients face with these issues. Childbirth. Topics regarding childbirth pertained to issues associated with mode of delivery, such as the clinical challenges of navigating the risks and benefits of a vaginal birth after a cesarean section (VBAC) or elective cesarean section at maternal request. At the core of these issues lie questions about medical and surgical intervention in pregnancy, the meaning of the birth experience for women, and the importance of incorporating a woman’s values and preferences into delivery plans.12 Complicating these questions are deeply troubling situations in which a health care provider may feel compelled to override the requests of a pregnant woman out of concerns of avoidable harms to the fetus. Infectious disease. Leading ethical issues expressed here related to the mandating of human papillomavirus vaccination and adolescents’ access to testing and treatment for sexually transmitted infections. Over the past decade, there has been a dramatic rise in the incidence of HPV, chlamydia, gonorrhea, and syphilis.13 The increase raises new questions for health care providers about how to balance individual and public health in the prevention and management of STIs, yet these issues are particularly salient when addressed among the population of adolescents and young adults who are at heightened risk for exposure to these infections but who have September-October 2014

limited ability to make private health care decisions about their reproductive and sexual health. Contraception and abortion. Decisions about if and when to have children have sparked controversy for generations. Family planning is facing new legal and financial barriers at the state and national levels, resulting in renewed concerns about the ability of women to actualize the choices they make about their bodies and families. Specifically, there is growing awareness of women’s ability to readily access emergency contraception but also to afford routine birth control if it is not part of their covered health care benefits. In the context of abortion, changes taking place locally and nationally present tremendous challenges for a woman in locating and accessing a provider who has the training to perform terminations and is willing to do so, as well as in affording family planning services or abortion riders to cover such procedures. Menopausal health. In recent years, there has been great controversy about the use of hormone therapy and “bioidentical” agents for the management of menopausal symptoms,14 leaving many women without access to therapies to manage very personal and intimate aspects of their lives. In this context, physicians face a series of questions about how to integrate an evolving understanding about the risks and benefits of hormone therapy with a woman’s values and preferences about her quality of life and what matters to her reproductive and sexual health. Related ethical issues include professional responsibilities to provide evidence-based menopausal management and to avoid factors that could compromise key aspects of a women’s health and well-being.15 Sexuality. Another important issue is sexuality, primarily ethical issues related to the sexual and reproductive health of lesbian, gay, bisexual, and transgender individuals. There is a growing appreciation among practicing obstetricians and H AS TI N GS C EN TE R RE P O RT

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gynecologists about the need for avoiding discrimination in access to and delivery of quality health care, including not just preventive health care but also fertility services. Issues bioethicists emphasized: a focus on technology-related questions An important trend appeared among the responses of bioethics educators. The issues identified as being of higher priority in bioethics training included preconception genetic testing, prenatal testing, assisted reproductive technologies, and maternal-fetal interventions. Overall, the majority of issues emphasized by bioethics educators pertain to the development of new reproductive and genetic technologies. Moreover, bioethics educators were cognizant of dilemmas that arise when innovation becomes part of clinical care without sufficient opportunity for consideration of the ethical, legal, and social issues ahead of time. Some of the most noteworthy points on these topics include the following: Preconception genetic testing. Advances in genetic technology and understandings of human disease have resulted in a host of new opportunities to identify heritable risk before pregnancy. For some individuals, this information can be used to guide decisions about whether to have genetically related children and whether to use interventions that may reduce the likelihood of having a child with a specific genetic condition. Such choices call for reflection on the value of knowing that a child might be born with a disease or might develop it later in childhood or adulthood, in addition to a host of reproductive and personal decisions that the expectant parents could make based on this information. Assisted reproductive technologies. Much has changed in assisted reproductive technologies since 1978, when the first child was born as a result of in vitro fertilization. There are many more assisted reproductive procedures available to help individuals begin or expand their families, including the use of preimplantation genetic diagnosis, donor gametes, and gestational surrogacy. While posthumous reproduction and uterine transplant represent less frequently performed procedures, their existence marks a challenging new ethical domain regarding the integration of new technologies and procedures into reproductive health care. Prenatal testing. The delivery of prenatal care has been dramatically altered by the introduction of new genetic technologies. Major headway has been made in the past years in cell-free fetal DNA technology and molecular techniques to identify genomic variances. Additionally, advances in imaging technologies have amplified the amount of information that can be gained about a developing fetus. Each step forward in prenatal testing technology raises further questions about what information expectant parents desire about the pregnancy and the choices that are made in light of that information. Interventions during pregnancy. Advances in science and technology generate significant ethical implications once the pregnancy is established. The emergence of fetal surgery and fetal care centers marks an important shift in how physicians 26 HASTI N G S C E N T E R R E P ORT

and patients view the risks and benefits of interventions that attempt to improve pregnancy outcomes. Equally important are questions about research involving pregnant women and vaccination during pregnancy—additional topics that speak to the ability of the pregnant woman to make informed and voluntary choices about her body and the pregnancy with an expanding array of prenatal care options. Understanding the differences between physician and educator responses One reason for the differences between physician and educator responses may be that some of the issues important to physicians have not yet been recognized or recently reexamined by the bioethics community. Taking the issue of childbirth as an example, ethical issues related to delivery received the attention of bioethicists in the early part of this decade. Much of this thoughtful ethical analysis focused on women’s preferences in decisions about VBAC and contributed to the development of important clinical practice recommendations for its place in delivery planning.16 Since that time, several new issues in obstetrics have arisen specific to childbirth and prenatal care. These issues are equally pertinent to the ethical considerations of women’s preferences in delivery planning but have not yet gained as much attention in the bioethics literature. One such development has been the growing debate about the option of cesarean delivery at maternal request for those women who elect not to have a vaginal delivery.17 Another issue pertains to the development of oversight measures that use an individual physician’s cesarean-section rate as a quality metric and a potential cause of professional penalization.18 While the goal is to reduce the number of cesarean deliveries performed annually, using cesarean-section rates as a quality metric for physicians introduces external factors into the shared decision-making process between a physician and patient. As a result, physicians face new clinical and ethical challenges to ensure that pregnant women’s needs and preferences—rather than external factors influenced by legislators or other policy-makers—are the primary drivers in the delivery of prenatal care. At present, these are cutting-edge topics yet to be recognized or given priority in graduate bioethics training. Another reason for the differences may be that issues bioethics educators have recognized as salient are not yet recognized—or not yet fully recognized—by physicians. On the one hand, differences in the disciplinary orientations of bioethicists and physicians, and in the professional spaces in which they function, may alter their perceptions of issues. The field of bioethics emerged from a historical milieu in which controversies arising in medicine and biomedical research fundamentally challenged presumptions about the allocation of health resources, respect for persons, and management of medical technology and clinical innovations.19 These early controversies centered on controversial topics such as abortion, assisted reproduction, dialysis, and organ transplantation. The academic field of bioethics was crafted largely by philosophers and theologians—both from September-October 2014

Establishing core topics and determining how much emphasis should be given to each one can be achieved only through collaboration between the bioethics and medical communities. disciplines long concerned with the axes of life and death20— which encouraged bioethics training programs to focus on moral quandaries at the extreme ends of human life, where questions about the use or foregoing of technology were paramount. These questions are often explored far from the primary care or outpatient setting. For instance, the issue of posthumous reproduction, which lies at the intersection of a number of different concepts regarding the beginning of life, the end of life, and individual reproductive liberty, receives a fair amount of attention in bioethics scholarship and legal discourse.21 In contrast, while some reproductive health care providers give thoughtful analysis to such topics, the practicalities of contemporary medical practice and patient care rarely allow the space to engage in such discussion in a similar fashion. Furthermore, it is not an issue that physicians regularly encounter in clinical practice, even if they specialize in assisted reproductive technologies. The disciplinary orientation of bioethicists may help them be uniquely attuned to imminent ethical dilemmas arising from advances in medical science and technology, providing a lens to examine and explore topics that may not yet be apparent to physicians but that play an important role in understanding how to integrate new technologies into patient care. On the other hand, the disconnect between bioethicist educators’ focus on the use of technology and physicians’ focus on matters related more to clinical decision-making may be a function of the current ethical guidance available to physicians. The boundaries of acceptable clinical and ethical practice have been well defined by leading professional organizations, such as the American Society for Reproductive Medicine and American Congress of Obstetricians and Gynecologists, developed with the help of rigorous and evidencebased input from bioethicists. Much of this guidance pertains to the highly controversial aspects of reproductive medicine. By providing physicians with strategies to recognize and engage ethical quandaries that emerge in reproductive medicine and provide clinical guidance to navigate such challenges, clinical practice recommendations may have mapped the terrain in a way that now gives physicians reassurance to deliver care in this well-defined space. As a result, physicians may already have sufficient guidance from professional organizations about the more provocative issues related to technology but less guidance on the issues that arise in the day-to-day delivery of patient care. This may lead physicians to see other underexplored but clinically relevant aspects of reproductive September-October 2014

medicine as more ethically problematic even though they are less controversial. Recommendations

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iven the magnitude of the ethical challenges in reproductive medicine, a two-way conversation between bioethics educators and physicians is needed so that each community can learn from the other. While physicians and patients may be best positioned to inform the bioethics community about the ethical issues they face in the clinical context, bioethicists may be best positioned to foresee challenges that new technologies are likely to present. In addition, bioethicists may be better prepared than physicians to contextualize these issues within existing bioethical discourse. Physicians face tremendous challenges in delivering patient care for which the bioethics community can provide resources. In a time of health care reform—which places greater demands on the clinical encounter with less available time and fewer staffing resources—physicians will likely face greater barriers to engaging ethical issues that play a critical role in the delivery of patient care. Addressing this challenge is particularly relevant given the pace at which advances are taking place in reproductive medicine, such as the rapid clinical integration of high-throughput genomic technologies in the context of prenatal testing.22 This presents a prime opportunity for the bioethics and medical communities to work together in a number of different forums. Collaboration in identifying the content of bioethics training curricula. One forum for dialog between bioethics educators and physicians is in the development of bioethics curricula, both in terms of the content of reproductive ethics in bioethics training programs and the emphasis placed on these topics. At a minimum, it will be important that even the generalist bioethics consultant knows enough about reproductive ethics to identify the key issues and initiate a dialog that incorporates key stakeholders. While not all bioethicists intend to work in the space of reproductive ethics, many will be asked to provide guidance about such issues at some point in their professional activities, whether as part of their efforts in research, policy, or education. For this reason, bioethics trainees should have a strong foundation in core issues as they relate to reproductive ethics and the skills to moderate informed discussions among patients and care providers. As bioethics training program directors consider the likelihood of future accreditation of their programs and anticipate H AS TI N GS C EN TE R RE P O RT

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the potential credentialing or quality attestation of ethics consultants,23 it will be important for them to know not only which issues arise most frequently in practice but also which cause the most troubling dilemmas. Establishing those core topics and determining how much emphasis should be given to each one can be achieved only by collaboration between the bioethics and medical communities. There is a prime opportunity for these communities to close the observed gap by joining together to structure curricula for graduate bioethics training programs that prepare consultants to address practical, real-life issues faced by clinicians and to consider future ethical issues as they emerge. This will require active engagement of bioethics educators and physicians, both now and as biomedical technologies continue to raise new ethical challenges and concerns for patients, clinicians, researchers, and society. To provide the greatest benefit, this interdisciplinary communication should take place not only with practicing physicians but also with physicians in training, whose observations and reactions may provide fresh insight into such issues. Collaboration in clinical training and experience. Another venue for interdisciplinary discussion is in the clinical training of bioethicists who will participate in patient care through clinical consultation. Our study demonstrated important differences in the perceptions and priorities of physicians and bioethics educators. As a result, there is a great value for bioethics trainees to gain an understanding of how decisions about reproductive health are framed and operationalized in the outpatient setting, not only within the context of a hospital or acute care setting. This would give trainees a perspective on clinician-patient experiences that might later escalate into ethical dilemmas and conflicts that unfold in the inpatient setting. These clinical experiences can be gained through clinical rotations in which bioethics trainees can work closely with reproductive health care providers in the community and outpatient settings. This is an additional and innovative opportunity for the collaborative discussion between bioethics educators and physicians. Collaboration in research. Our study raises an important new area of inquiry that further investigation by bioethicists and reproductive health care providers may help answer. Specifically, there is a need for additional qualitative research to gain a richer and textured understanding of the perspectives of physicians. An additional area for empirical work is in gaining a better understanding of societal attitudes on these topics, as the decisions made between a patient and her or his health care provider are increasingly shaped in the public arena. Public discourse has a growing impact on the ability to access reproductive health care services, which involves not only locating a provider or institution but also settling, as a society, on the services that should be included within the covered benefits of health care plans. Data gathered from these populations and contextualized alongside the perspectives of the medical and bioethics communities are critical to the development and continuous quality improvement of bioethics 28 HASTI N G S C E N T E R R E P ORT

training programs. Such endeavors are not only a prime area of research but also an opportunity for collaboration between the leaders in empirical and clinical bioethics with those in bioethics education to advance the profession in innovative ways. Finally, bioethicists need to have a better understanding of the physician-patient conversations in which decisions with important ethical significance take place. Thus, there is also a place for research that includes direct observations of these discussions. Our findings shed light on the need to reevaluate bioethics training curricula specific to reproductive medicine. As new technologies and new issues emerge in other areas of medicine, efforts to develop new curricular content across the board must be addressed. While this work focuses on clinical ethics consultation, it is relevant to other aspects of bioethics and, particularly, to those that address the research, oversight, and policies relevant to advances in reproductive science. Beyond reproductive medicine, our results highlight the value of revisiting the relevance of bioethics training in other fields of medicine. Acknowledgments

This work was supported by a seed grant from the Center for Genetic Research Ethics and Law (National Human Genome Research Institute grant P50HG003390). Kevin Jacobson compiled the list of bioethics training programs that comprised the sample for this study. The authors also thank Marion Danis for sharing the survey instrument developed by Gordon DuVal et al. and for providing advice in the development of this study. Benjamin Wilfond also provided advice and assistance with the study, and Mildred Solomon offered invaluable guidance in the final development of the paper. 1. L. Walters, “Ethics and New Reproductive Technologies: An International Review of Committee Statements,” Hastings Center Report 17, no. 3 (1987): 3-9; G. Pennings and G. de Wert, “Evolving Ethics in Medically Assisted Reproduction,” Human Reproduction Update 9, no. 4 (2003): 397-404; D. Schafer, R. Baumann, and M. Kettner, “Ethics and Reproductive Medicine,” Human Reproduction Update 2, no. 5 (1996): 447-56. 2. G. E. Pence, Classic Cases in Bioethics: Accounts of Cases That Have Shaped Medical Ethics with Philosophical, Legal, and Historical Backgrounds (New York: McGraw Hill, 2004). 3. J. Malek, “Identity, Harm, and the Ethics of Reproductive Technology,” Journal of Medicine and Philosophy 31, no. 1 (2006): 83-95; T. H. Murray, “What Are Families For? Getting to an Ethics of Reproductive Technology,” Hastings Center Report 32, no. 3 (2002): 41-45; T. H. Murray, The Worth of a Child (Berkeley: University of California Press,1996). 4. Murray, “What Are Families For?”; D. Birenbaum-Carmeli and M. C. Inhorn. eds., Assisting Reproduction, Testing Genes (New York: Berghahn Books, 2009); H. M. W. Bos and N. K. Gartrell, “Adolescents of the U.S. National Longitudinal Lesbian Family Study: The Impact of Having a Known or an Unknown Donor on the Stability of Psychological Adjustment,” Human Reproduction 26, no. 3 (2011): 630-37; S. Shkedi-Rafid and Y. Hashiloni-Dolev, “Egg Freezing for Age-Related Fertility Decline: Preventive Medicine or a Further Medicalization of Reproduction? Analyzing the New Israeli Policy,” Fertility and Sterility 96, no. 2 (2011): 291-94; B. Steinbock, Life before Birth:

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The Moral and Legal Status of Embryos and Fetuses (New York: Oxford University Press, 2011). 5. J. P. Spike, “The Birth of Clinical Ethics Consultation as a Profession,” American Journal of Bioethics 14, no. 1 (2014): 20-22; E. Kodish and J. Fins et al., “Quality Attestation for Clinical Ethics Consultants: A Two-Step Model from the American Society for Bioethics and Humanities,” Hastings Center Report 43, no. 5 (2013): 26-36; B. H. Childs, “Credentialing Clinical Ethics Consultants: Lessons to be Learned,” HEC Forum 21, no. 3 (2009): 231-40; D. Cummins, “The Professional Status of Bioethics Consultation,” Theoretical Medicine 23, no. 1 (2002): 19-43; J. A. Hynds, “The Core Competencies: Addressing Yesterday’s Challenges?,” American Journal of Bioethics 31, no. 2 (2013): 22-23; N. N. Dubler and J. Blustein, “Credentialing Ethics Consultants: An Invitation to Collaboration,” American Journal of Bioethics 7, no. 2 (2007): 35-37. 6. Kodish and Fins et al., “Quality Attestation for Clinical Ethics Consultants”; M. P. Aulisio and L. S. Rothenberg, “Bioethics, Medical Humanities, and the Future of the ‘Field’: Reflections on the Results of the ASBH Survey of North American Graduate Bioethics/Medical Humanities Training Programs,” American Journal of Bioethics 2, no. 4 (2002): 3-9; J. M. DuBois and J. Burkemper, “Ethics Education in U.S. Medical Schools: A Study of Syllabi,” Academic Medicine 77, no. 5 (2002): 432-37; G. DuVal et al., “A National Survey of U.S. Internists’ Experiences with Ethical Dilemmas and Ethics Consultation,” Journal of General Internal Medicine 19, no. 3 (2004): 251-58; L. S. Lehmann et al., “A Survey of Medical Ethics Education at U.S. and Canadian Medical Schools,” Academic Medicine 79, no. 7 (2004): 682-89; A. Tarzian, “Health Care Ethics Consultation: An Update on Core Competencies and Emerging Standards from the American Society for Bioethics and Humanities’ Core Competencies Update Task Force,” American Journal of Bioethics 13, no. 2 (: 2013): 3-13. 7. Kodish and Fins et al., “Quality Attestation for Clinical Ethics Consultants.” 8. American Society for Bioethics and Humanities’s Clinical Ethics Task Force, Improving Competence in Clinical Ethics Consultation: An Education Guide (Glenview, IL: ASBH, 2009). 9. J. M. Cain, T. Elkins, and B. F. Bernard, “The Status of Ethics Education in Obstetrics and Gynecology,” Obstetrics and Gynecology 83, no. 2 (1994): 315-20. 10. DuVal et al., “A National Survey of U.S. Internists’ Experiences with Ethical Dilemmas and Ethics Consultation.” 11. S. Merriam, Qualitative Research: A Guide to Design and Implementation (San Francisco: Jossey-Bass, 2009); V. Braun and V. Clarke, “Using Thematic Analysis in Psychology,” Qualitative Research in Psychology 3, no. 2 (2006): 77-101. 12. M. O. Little et al., “Mode of Delivery: Toward Responsible Inclusion of Patient Preferences,” Obstetrics and Gynecology 112, no. 4 (2008): 913-18; A. D. Lyerly, A Good Birth: Finding the Positive and

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Profound in Your Childbirth Experience (New York: Penguin Group, 2013). 13. Centers for Disease Control and Prevention, Sexually Transmitted Disease Surveillance 2012 (Atlanta, GA: U.S. Department of Health and Human Services, 2013). 14. J. E. Rossouw et al., “Risks and Benefits of Estrogen plus Progestin in Healthy Postmenopausal Women: Principal Results from the Women’s Health Initiative Randomized Controlled Trial,” Journal of the American Medical Association 228 (2002): 321-33. 15. M. J. Murtagh and J. Hepworth, “Feminist Ethics and Menopause: Autonomy and Decision-Making in Primary Medical Care,” Social Science Medicine 56 (2003): 643-52. 16. National Institutes of Health, “National Institutes of Health Consensus Development Conference Statement: Vaginal Birth after Cesarean: New Insights,” Seminars in Perinatology 34, no. 5 (2010): 351-65; National Institutes of Health, “NIH State-of-the-Science Conference Statement on Cesarean Delivery on Maternal Request,” NIH Consensus State of the Science Statements 23, no. 1 (2006): 1-29. 17. H. Minkoff, “The Ethics of Cesarean Section by Choice,” Seminars in Perinatology 30, no. 5 (2006): 309-12; J. Ecker, “Elective Cesarean Delivery on Maternal Request,” Journal of the American Medical Association 309 (2013): 1930-36. 18. Agency for Healthcare Research and Quality, AHRQ QI: Inpatient Quality Indicators # 33: Technical Specifications. Primary Cesarean Delivery Rate, version 4.4 (Rockville, MD: Agency for Healthcare Research and Quality, 2012); S. K. Srinivas, C. Fager, and S. A. Lorch, “Evaluating Risk-Adjusted Cesarean Delivery Rate as a Measure of Obstetric Quality,” Obstetrics and Gynecology 115, no. 5 (2010): 1007-13. 19. A. Jonsen, “The Birth of Bioethics,” Hastings Center Report 23, no. 6 (1993): S1-S4. 20. Ibid. 21. V. K. Blake and H. L. Kushnick, Ethical Implications of Posthumous Reproduction: Third-Party Reproduction (New York: Springer, 2014). 22. M. E. Norton, N. C. Rose, and P. Benn, “Noninvasive Prenatal Testing for Fetal Aneuploidy: Clinical Assessment and a Plea for Restraint,” Obstetrics and Gynecology 121, no. 4 (2013): 847-50; P. A. Benn and A. R. Chapman, “Practical and Ethical Considerations of Noninvasive Prenatal Diagnosis,” Journal of the American Medical Association 301 (2009): 2154-56; L. C. Sayres et al., “Cell-Free Fetal DNA Testing: A Pilot Study of Obstetric Healthcare Provider Attitudes toward Clinical Implementation,” Prenatal Diagnosis 31, no. 11 (2011): 1070-76. 23. Kodish and Fins et al., “Quality Attestation for Clinical Ethics Consultants”; American Society for Bioethics and Humanities’s Clinical Ethics Task Force, Improving Competence in Clinical Ethics Consultation: An Education Guide.

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