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Takes ethnographic approach to views about & impact of prental diagnosis; emotional, cultural & moral views.
How Methodology Bleeds
into Daily Life
* * *
Why am I having amniocentesis? I'm 42. I think at my age I'd be foolish, anyone would be foolish, not to have this test. (Brenda Kelly, white lawyer)
What is the purpose to this test? The purpose is to know what God has in store for you, so you can wonder at the marvels of his ways. (Lynthia Cato, 37, Trinidad-born factory worker)
You ask me why I am crying? I am crying because no one told me that I could have such a problem as sickle cell, that I carry this in my blood, and that it is now too late to test the baby. That is the reason I am crying. (Janis Winter, 32, African-American teacher's aide)
I don't smoke, I don't drink, I don't take drugs, I eat good food, I take good care of myself. What do I need this test for? (Dominique Laurent, 39, Haitian garment worker)
This book explores the social impact and cultural meaning of prenatal diagnosis, one of the most routinized of the new reproductive technologies. In the United States, as in most late industrialized countries, amniocentesis and related prenatal diagnostic technologies are used to screen fetuses for chromosomal anomalies and neural tube problems during the second trimester of pregnancy, when women and their supporters may choose to continue or end the pregnancy should a positive diagnosis of a serious fetal problem be made. How and why has this reproductive technology developed? How hasit become part of routine pregnancy care for some segments of the population? Who uses, refuses, and might desire to use it, and under what conditions is it offered? How do health care providers understand their own role, and how do they communicate the benefits and burdens of the test to their patients from diverse social backgrounds? How do women and their supporters describe and evaluate their experiences with this test? Is this test "revolutionizing pregnancy," as is often claimed, and if so, for whom? How are we to discuss the simultaneously eugenic and liberating agendas of prenatal testing, and how are they enacted for and by different individuals and communities? How are popular understandings of genetics and inheritance shaped in contemporary America? What does scientific literacy mean in a culture as deeply stratified as our own?
I have worked on these problems as an anthropologist and as a feminist activist for more than a decade. In learning about the social impact and cultural meaning of prenatal diagnosis, I have used standard anthropological methods of participant observation. That professional umbrella is a catchall label for hands-on research that is open-ended, and locates the researcher as far into the experiences of the people whose lives are touched by the topic as she can figure out how to go. My methods have been as conventional as sitting through medical school lectures or interviewing candidates for prenatal diagnosis in English, Spanish, and sometimes French; as arcane as learning to recognize and cut up laboratory photographs of chromosomes so they could be assembled into karyotypes; as familial as taking my toddler to a charity performance of the circus to benefit the National Down Syndrome Society at which she appeared to be the only nondisabled child. The use of standardized interview topics has provided broad comparability across many constituencies with whom I have spoken. But the basic benefit of participant observation is its open-endedness: I set out with one set of research questions, and was forced to enlarge and transform them as people educated me on the complexity of the issues as they perceived them.
This book is divided into eleven chapters. These chapters are organized neither chronologically nor ecologically, the two dominant genres of classical anthropological presentation. Rather, I begin with a chapter discussing the history of prenatal diagnosis and its related technologies, sketching the complex social, legal, and political transformations that supported its development. I then follow the technology through its trajectory, as pregnant women encounter it. Each chapter takes up a communicative and practical problem posed by the development of this new technology: communication and miscommunication between providers and patients; pregnant women's anxiety and interpretation of what sonograms and chromosomes mean to them; the role of the fetal imaginary in thinking about disabling conditions; refusing the test; culturing chromosomes; getting bad news; living with children who have diagnosable conditions; and more. My goal in intersecting and juxtaposing many diverse perspectives on this topic is to create a Venn diagram, overlapping the social spaces in which amniocentesis and related technologies have developed. In making a map of both the obvious and the more interstitial places within which the simultaneously liberating and eugenic aspects of this technology develop, I attempt to describe and interpret the range of practices and problems associated with it. It is my contention that the construction and routinization of this technology is turning the women to whom it is offered into moral pioneers: Situated on a research frontier of the expanding capactity for prenatal genetic diagnosis, they are forced to judge the quality of their own fetuses, making concrete and embodied decisions about the standards for entry into the human community.
In overlapping many perspectives on amniocentesis, I hope to make a contribution to at least three discussions. The first concerns the technological transformation of pregnancy, a discussion which usually focuses on what have come to be called the new reproductive technologies: How "new" or "revolutionary" are the cluster of fertility-controlling practices like amniocentesis, when we examine their concrete social matrix, and not just their abstract potential as pieces of technology? The second examines the practical intersection of disability rights and reproductive rights, where issues of abortion on the one hand, and inclusion on the other, are now aspects of a national political discourse in the contemporary United States. The third examines the role of scientific literacy in late-twentieth-century American culture, with an emphasis on both practical knowledge and the very American nature of how we use it. The idea that science and technology provide positive resources for improving or even perfecting life is deep-seated in the history of the United States. So, too, is unequal access to those resources, and a consequent range of perceptions and responses to the burdens as well as the benefits that their stratified presence may impose. These concerns all take the diversity of gender, power, and culture as the starting point for analysis.
The Need for Women-Centered Analysis
When I began to study the impact and meaning of a new reproductive technology, my initial goal was to wrest understandings from the discourse of experts, and to relocate them in popular practices and perceptions. I came to this formulation the hard way: As a 36-year-old feminist health activist, I had chosen, with some ambivalence, to undergo prenatal diagnosis in my first pregnancy in 1983. When my fetus was diagnosed as having Down syndrome, the shock, grief, and confusion were enormous. Mike Hooper and I had ardently desired this pregnancy; together, we now chose to end it. In trying to recover from a devastating experience, I turned to the mundane tools of intellectuals: A medical library search quickly convinced me that the voices of experts (bioethicists, lawyers, doctors, and health economists, most of them male, all of them highly educated, and overwhelmingly white) dominated the discourse on prenatal diagnosis. Absent from the published literature were the concerns of the women of different class, racial, ethnic, and religious backgrounds who use, or might use, or might refuse to use the new technology. I also turned to the tools of feminism, constructing a network through other health activists to locate a few women who had sustained similar experiences. Together, we amassed huge phone bills, supporting one another as we tried to make sense of the painful decision to end the life of a fetus we had first desired and carried. Increasingly convinced that the complex topic of prenatal testing and abortion begged for a woman-centered analysis, I sought the help of sympathetic health care providers to gain access to other women, and began interviewing in late 1983. In 1984, I published an account of my own experiences in Ms. Magazine, hoping to provoke popular feminist discussion and awareness of this topic (Rapp 1984). I also gave birth to a healthy baby; the small, ordinary miracle of her existence served to increase my interest in what happened to other women whose pregnancies, like my own earlier one, did not lead to happy endings. By the mid-1980s, other feminist scholars and activists also began writing on what were loosely coming to be called the "new reproductive technologies." I read their work with enormous appreciation and relief; surely, the ambiguous problems posed by technologies that offer more control over pregnancy outcomes while enforcing more medical surveillance deserved extensive feminist commentary. Those early works spoke with passion and courage about what women lost in having their pregnancies increasingly medicalized. But they also often spoke as if women's interests in reproductive technologies were both clear-cut and unified: Feminists usually described pregnancy as a natural process and its technologization as a male power play to contain Mother Nature. In many early analyses, male pharmacrats (to borrow Gena Corea's felicitous phrase) had controlling interests in the biotechnology companies, the experimental research, and the private medical practices within which women submitted to the new reproductive technologies. While enormously sympathetic to the critique of economic, social, and gendered power at the heart of such analyses, I was also skeptical on the basis of the complexity of my own experiences and those of the women I had begun to interview. We were both grateful for and critical of the technology, and we knew that "nature" was too simple a label for our pregnancy problems and possibilities. Who speaks for the diversity of women in such a circumstance? We will return to the problems of expert discourse—whether biomedical, feminist, or other—in chapters 2 and 3.
Recognition of the power of expert discourse reinforced my predilections to use anthropological tools in the service of telling another story: The discourses and practices of biomedicine and technology are played out on a complex cultural ground at the end of the twentieth century in the United States. Indeed, recent developments in science studies remind us that biomedical technology is itself a highly contested cultural object, porous in its diverse social constructions, uses, and exclusions. The transformations of pregnancy, experiences with disabling conditions, and family life on which prenatal diagnostic technology touches are deeply gendered; they are also powerfully influenced by class position, ethnic and cultural community background, and the resources and orientations provided by religions. Moreover, the institutional resources, constraints, and possibilities within which pregnancy is now monitored are highly contested in our current political-economic system: Access to comprehensive health care and abortion stands at the heart of contemporary political transformations and struggles. There can thus be no simple evaluation of this, or any other, new intervention into reproduction. I hope this book makes a case for the complexity, diversity, and contradictory nature of the impact of reproductive technology.
Attempting to set my own amniocentesis experiences against a larger social background, I set out to map the terrain of an emerging technology in 1983. My prior research projects had always engaged what I took to be social problems or circumstances requiring a structural understanding; now, the dilemmas I was confronting were simultaneously political-economic, epistemological, and ethical; I had become a guinea pig in my own research. Working through a sympathetic private physician, I began by interviewing twenty-five women who had chosen abortions after receiving what is so antiseptically labeled a positive diagnosis. In the face of a confusing and traumatic experience, they often described themselves as at a loss for words. These women were working in a communicative system whose vocabulary is exclusively medical, whose grammar is technological, and whose syntax has yet to be negotiated. It was not always easy for them to frame alternative descriptions with which to more accurately represent the impact of amniocentesis in their own lives.
Inventing a Methodology
In 1984, my proposal to undertake fieldwork was approved by the Medical and Health Research Association Inc., which oversees all Health Department research in New York City, and I was warmly welcomed by the staff of the Prenatal Diagnosis Laboratory (PDL) of New York City. The PDL stood as a model for what mass prenatal diagnostic services are, and might become, and it was the largest cytogenetics laboratory attached to a public health department in the United States. Its work informs much of this book, especially as presented in chapters 3, 4, and 5. Over the next four years, I spent from one to four days each week in the company of the genetic counselors who worked for PDL, following them on their rounds through city hospitals. I observed them and their PDL colleagues counseling more than 230 patients and often turned to them for help compiling historical and statistical information on PDL's services. Over the years, I was welcomed into sessions by the three full-time and two part-time genetic counselors who also worked at the PDL, and by the numerous graduate students who interned there. All consented to be observed and interviewed; all also provided much informal and valuable information for my study. The laboratory staff was more than tolerant during the two months that I imposed a maverick internship upon them, learning to spin and culture fluids, focus a microscope, and cut chromosomes into karyotypes. They must often have wondered why I thought science was exotic, when I could have gone to more traditional anthropological locations.
Through observations of PDL intake patient interviews, I also began to recruit a sample of women who were having amniocentesis and were willing to be interviewed at home (ideally, during the long weeks of waiting for test results). I initially attempted to conduct interviews with the partners and other close supporters of this patient population, but this proved a difficult task; I was able to interview only fifteen men (or FOFs, fathers of fetuses, as I came to think of them), compared to more than eighty women. I describe what I learned in all of these interviews in chapters 5 and 6, and I speculate on why men became an endangered species in this study in chapters 6 and 7. I have included whatever I know both from men directly, and about men less directly, from their partners, throughout the book, but the quality and quantity of my information concerning the exotic male sex and prenatal testing remains spotty.
PDL counselors and staff also helped me to recruit a sample of women who had received the news that a serious problem has been diagnosed in their fetus, and that a decision to continue or end the pregnancy had to be consciously made. These immeasurably enriched the understandings I had developed in the first pilot study. Later, I added interviews with ten more women with positive diagnoses through another medical center, bringing the total to forty-two.
Just as I began working through the PDL genetics team, my Ms. Magazine article appeared (Rapp 1984). It elicited more than one hundred letters in response, and I entered into correspondence with scores of women about their own amniocentesis stories. The outpouring was very moving. Often, their authors and I remained in correspondence through many rounds of missives, and in some cases I asked for and received permission to quote from the letters.
Through my observations at the PDL, I also began to interview women who chose not to take the test, to understand how a routinizing technology does not necessarily stay en route for everyone. Informally, I spoke with scores of women who opted during routine intake interviews not to use the test; eighteen women and two men granted me more formal interviews, sometimes through home visits, more often over the telephone. Their reasoning is discussed in chapter 7. Through my work with PDL counselors, I became interested in counseling as a new women's profession, and I set off to interview thirty-five counselors, at least one from each medical center in New York City where prenatal diagnostic services are offered. Later, with my colleague Diana Punales-Morejon, I conducted a survey of the (then) fifteen North American programs that offer master's degree programs in genetic counseling (Punales-Morejon and Rapp 1993; Rapp 1993a). While we focused on the problem of training counselors to understand ethno-cultural diversity among the urban populations they would soon serve, we also learned a great deal about how the profession has developed, and how curriculum and certification procedures change. Most recently, I interviewed ten geneticists to understand their perceptions of both the development of their field, and its social and ethical impact.
In 1984, right after the Ms. Magazine article was published, I also received a phone call that changed the course of my research dramatically. One of the founding members of a Down Syndrome Parents Support Group (Manhattan and the Bronx), the mother of a child with Down syndrome, challenged some of my descriptions of disabled children and the social services available to them. I quickly joined the support group, and with her philosophical and practical guidance began learning my way around the world of disability rights and educational services for children with special needs. I eventually interviewed thirty-eight families in which a child had Down syndrome, first through meeting activists in two parent support groups, later through the work I did on the education committee of one of those groups, and then through a family-court-funded early-intervention program for developmentally delayed children. On a more haphazard basis, I spoke with a dozen grown siblings of children with Down syndrome, and interviewed a handful of parents whose offspring had other chromosomal or genetic disabilities. Over the years of this study, I learned a great deal about two related and tension-fraught issues. The first is the need to champion the reproductive rights of women to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability. The second is the need to support adequate, nonstigmatizing, integrative services for all the children, including disabled children, that women bear. The intersection of disability rights and reproductive rights as paradoxically linked feminist issues has emerged as central to my political and intellectual work.
In 1989, I added another piece to my research puzzle. Because the patient population served by the PDL was highly polarized, I was learning a lot about middle-class professional families (disproportionately white) and working-poor families (disproportionately African-American and Latino). In order to avoid conflating race and class in both my data collection and its interpretation, I sought and received permission to work in the Division of Medical Genetics, Beth Israel Medical Center, which held the contract to perform amniocentesis for several Hospital Insurance Plan (HIP) groups in the metropolitan area. As the oldest health maintenance organization in New York City, HIP has always served a solidly working-class, often unionized, and quite racially diverse population. More recently, HIP has added middle-class constituencies as the crisis in U.S. health insurance dictates cheaper employer-provided plans. Beth Israel provided what I hoped would be the "missing middle" to my data set. The Beth Israel genetics team had also developed an innovative outreach program in New York's Chinatown, whose hardworking and linguistically isolated population was not always easy to reach. And the genetics staff included several native Spanish speakers with professional commitments to serving new immigrant communities. For an anthropologist, it provided another excellent research site. Using protocols developed at the PDL, I observed one hundred intake interviews, conducted another twenty-five home interviews with women awaiting amniocentesis results, and met with ten women who had received positive diagnoses. I also visited the neonatal intensive care unit, observed weekly rounds, hung out in the laboratory, and learned about DNA diagnosis as the genetics team graciously incorporated me into their working life.
Through the PDL, Beth Israel, and the genetic counselors that I interviewed, I spent more than 130 days observing hospital-based counseling sessions. Initially, I intended to contrast observations and interviews with patients from white, Hispanic, and African-American backgrounds, distinguishing middle-class, working-class, and working-poor groups. With some effort, I managed to collect my comparative sample, primarily at Beth Israel, Harlem, Roosevelt, and Woodhull hospitals, with a few additional observational days and follow-up interviews at hospitals in Staten Island, the Bronx, and Queens. But the diversity I encountered quickly underlined how static such sociological classifications can become. Ethnic identity is, of course, far more complex than such census categories indicate; and while occupation and payment plan yield good approximations of socioeconomic status, they barely touch the experiential meanings of social class. Moreover, variation across New York's hospital catchment areas is profound: "Hispanic" on Manhattan's West Side virtually stands for Puerto Rican and Dominican. Many who use this label for themselves are second- or even third-generation members of long-standing urban communities. But in the parts of Brooklyn where I worked, "Hispanic" was also likely to cover people from Honduras, Nicaragua, Guatemala, or Panama, many of whom had only recently arrived, and substantial numbers of whom were from rural backgrounds. And in Queens, Ecuadorian, Colombian, Peruvian, and Argentinean women and their families fell under this label. Sometimes socioeconomic standing varied throughout an individual's lifetime, as was true of many Colombians, Argentineans, and Ecuadorians who had middle-class educations by the standards of their home country but found themselves in working-class jobs after migrating to New York. Thus the Venn diagram I had hoped to construct, in which class differences could be distinguished from, and overlapped with ethnic and cultural resources, was muddied by variations in micro experiences as well as macro economics. This is a subject I discuss in chapters 5 and 6, where I speculate about the ethnic and cultural contributions to responses to prenatal diagnosis.
Yet over the course of several years of research, I came to pick out patterns that did reflect the resources and boundaries of the class and ethnic identities to which people were assigned or assigned themselves. There is thus an analytic tension throughout this text between the abstract and categorical labels I occasionally use ("white, middle-class professional"; "Hispanic service worker") and the descriptive particularity of individual stories I attempt to tell ("Ileana Mendez, Ecuadorian baby-sitter"; "Linda Scott, U.S.-born theater set designer"). I intend these labels to signal the routes and life trajectories within which an individual's consciousness is forged, without creating pigeonholes into which people are too easily slotted. Individual consciousness is always complex and cannot be reduced to the analytic categories within which empirically minded social investigators are most comfortable working. Yet we cannot do away with such categories, even as we interrogate them, for they provide not only sorting devices, but signposts on the way to understanding socially significant differences. And throughout this research, different differences took on salience according to context. Matters of class, for example, figure large in problems of scientific literacy, confidence, and agency in medical settings. But religion and community background are more likely to shape attitudes toward disability and abortion. Children with disabilities may, paradoxically, have more stimulating environments when they come from larger families; such families are, on average, less likely to be middle-class than the more privileged homes in which a child with a disability is more likely to be a first or only child. Tracking these differences became a central concern of this project. Although the biomedical technology I was tracking produces universal and uniform claims about the advantages of prenatal testing, my research increasingly revealed alternative and sometimes competing rationales through which members of different communities made sense of its burdens and benefits. And these other forms of articulation were at once deeply individual and highly social; I needed to read them through the grid of differentiating collective categories as well as individual narratives. The problems and possibilities offered by access to a specific biomedical technology fall upon social ground which is always already crosscut by prior resources and hierarchies. The specificity and accuracy of our descriptive tools are thus always incomplete; such categories can permeate the problems we attempt to understand, helping to clarify them, but their effects are quite partial. And the form of their partiality is never impartial, for they bring with them the possibility of (re)creating stereotypes as well as illuminating generalizations.
My awareness of this tension evolved as I moved from hospital to hospital, discovering similarities and differences among the people from whom I was learning. My initial observations took place in a hospital with a robust mix of private and clinic patients, and I eventually conducted fieldwork at seven hospitals which ran the gamut of services and populations that characterize health care in New York City's hospitals. Each hospital staff and patient population had its own characteristics, but I have chosen to agglomerate them into three hospital types in the interests of protecting anonymity: Elite, Middle, and City. Implied in those names is an obvious comparison. Elite Hospitals serve predominantly private, middle- and upper-middle-class clients; in Manhattan, these are most likely to be white, a census category I learned to challenge as I encountered its internal diversity. Middle Hospitals serve a more balanced mix of private and clinic patients, and those sent by their HMOs, and the racial-ethnic mix varies dramatically, depending on the shifting nature of immigration and housing in the particular borough. At Middle Hospitals, I realized again and again that New York's population receiving prenatal care is a rainbow of Hawaiians married to Lebanese, Mormons married to Buddhists, Iranians married to Poles, Colombians married to Egyptians, Filipinos, Greeks, Haitians, and Mexicans, and single mothers with and without partners whose roots lie all over the globe, as well as the more predictable ethnic varieties. City Hospitals serve an almost exclusively working-poor clinic population, overwhelmingly funded by Medicaid. Depending on locale, such populations tend to be African-American, Afro-Caribbean, and/or new or old immigrants who are Spanish-speaking. A great deal of diversity is thus loosely categorized into these three service types, and the neat census categories around which I had initially designed my sample kept decomposing themselves in front of my eyes. Thus, as the methods and locales of this study kept expanding, so did my comprehension of the challenges that large and diverse urban populations pose for accurate description. Moreover, "accurate" description implies many things: an historical understanding of the lack of closure to almost any population, especially an urban population in the United States at the end of the twentieth century; a commitment to interrogate how categories are constructed and used by bureaucrats and the people who "choose" to inhabit them, and the consequences of those uses; and a willingness to locate myself and what I am studying in the relations of knowledge and power which are in part shaped by the deployment of such categories.
I have provided a narrative of how my understandings of the topography of amniocentesis developed for four reasons. The first, methodological accuracy, dictates that I describe the sample, and its limits, from which my understandings emerged. Though I have spent thousands of days as a participant-observer of this issue in its social context, there are inevitable gaps in my knowledge. Silences in my understandings as well as the clamorous conversations between myself and the many constituencies with whom I worked must be judged by readers. To do so, they need to know how, where, and under what conditions I came to know what I now claim to know.
Closely linked to this is the second, more theoretical problem of how to study a social phenomenon that differs considerably from the usual objects of anthropological investigation: in this case, a new reproductive technology. New medical technologies surely fall under the domain of medical anthropological analysis (e.g., Berg and Casper 1995; Koenig and Casper 1996; Lindenbaum and Lock 1993). They also benefit from the methodological debates available in science and technology studies (e.g., Feenberg and Hannay 1995; Hess 1995; Jasanoff, Markle et al. 1995; Pickering 1992, 1995). We are here far removed from the study of "ethnic groups," "neighborhoods," "women's reproductive histories," or even "cultural beliefs about pregnancy," all of which appear as minor themes in this study; all have provided fodder for rich anthropological analyses of gender, childbearing, health, and illness (Ginsburg and Rapp 1991). I hope that tracing the intersection of the multiple constituencies, contexts, and conflicts in which a cultural analysis of a developing reproductive technology is constituted will provide materials for a collective rethinking of technology at the end of the twentieth century.
Third, and more abstractly, this problem of a new object and ever-expanding pools of research subjects marks an empirical terrain that is by its very nature open-ended and unbounded. Many anthropologists studying "complex societies" have noted the problem of a lack of boundaries to their units of analysis: Our ethnographic work is continuously relocated in practice, as we incorporate an appreciation of lack of holism, nonclosure, and self-positioning into the representations of the phenomena we study. This study is also a contribution to a discussion of what some have called "multi-sited ethnography" (Marcus 1995), as many anthropologists endeavor to break the connection of space, place, and culture (Appadurai 1996; Gupta and Ferguson 1997a, 1997b), studying "multiply inflected cultural objects" (Harding 1994). Such studies are premised on a lack of clear boundaries to our unit or object of analysis, No matter how many Haitian women accepting or refusing "the needle test" I interview, however many medical journals I read as cultural texts, nor how many professional genetics congresses I attend, there will always be another mother of a child with Down syndrome in East Harlem from whom I might learn a slightly different story, another geneticist who has thought deeply about the ethical implications of piloting cystic fibrosis carrier screening, another educational TV program on the Human Genome Project, or a sitcom featuring an "older" pregnant woman as trickster-heroine. Engagement with all would enrich my cultural understandings of a new technology. This study thus has no obvious theoretical or situational limits.
Which leads to my fourth reason: In choosing an open-ended "complex cultural object" which is a piece of reproductive technology; I am also engaging a cascade of issues that travel under the sign of science studies. Here, I join a growing corps of anthropologists who work in and around various sciences, attempting to understand their sociocultural infrastructures (Franklin 1995; Heath 1998; Hess 1995, 1998; Layne 1998a, 1998b; Martin 1998; Nader 1996; Traweek 1992, 1993). Most obviously, the science of biomedicine makes universal claims to investigate, describe, and intervene in embodied processes which are deemed precultural or acultural. But as an anthropologist studying both the claims of biomedicine and its interventions in the realm of prenatal diagnosis, I am arguing that the very objects of its knowledge—chromosomes, health risks, fetuses—and its technologies of intervention—sonography, chromosome studies, maternal and fetal health statistics—are culturally constituted. I hope to show that constitution on multiple levels. For example, the practices which make up amniocentesis are simultaneously globalized and localized: Though the history of contemporary genetics includes a growing international consensus about how chromosomes and genes should be described, there is far less agreement about what these entities specifically do, and even less about how their abnormalities should be treated. When investigating prenatal diagnosis in New York City, I came to understand its practices as at once broadly international in scope and highly national. U.S. national ideologies of transparency and perfectibility figure large in its expanding use, and local public health policies regulate not only the laboratories and clinics within which these services are offered, but the very populations who are likely to become its practitioners and patients. Thus, "science as culture" is constructed inside clinical laboratories, consulting rooms, and technical services; it is also a site of cultural intersection. The "different differences" through which local communities understand fetuses, heredity, disabilities, and abortions constitute both the terrain on which biomedical science makes its powerful universalizing claims, and a continuous source of challenges to those claims. In the contemporary United States, and especially in a multicultural city like New York, not all populations or individuals accept the rationality of prenatal screening for disabilities as self-evident; learning about a rich and diverse range of culturally organized gender relations, kinship connections, and interpretations of what counts as illness and health allows us to examine the acultural discourse of scientific benefits and burdens through an empirical cultural grid. As I learned my way around the clinic, the laboratory, and the homes of pregnant women and their supporters, and families with disabled children, I was continually challenged to rethink biomedical science as a cultural object with enormous discursive and practical powers to define what it is to be normatively human, and to resist alternative versions and challenges to that normativity.
Of course, the quality of the data I collected, and the consequent density of my understandings of these open-ended, intersecting, and highly charged terrains on which amniocentesis is constructed, are quite variable. Much of what I know I learned from routinized, repetitive observation over many years. In citing or paraphrasing individual stories, I have relied heavily on standard interview techniques whose results were almost always taped and transcribed. But some interviews took place on the telephone and lasted only twenty minutes, while other women called me back as frequently as I called them, pursuing their own agendas through many encounters, often using me as a sounding board for thinking through tough decisions and situations. Sometimes, a projected two-hour home interview expanded into multiple visits, and some "informant" families became friends. With them, the tape ran only episodically, but I learned a lot at family outings to the beach, business lunches with mothers and occasionally fathers, and our mutual agonizing over nursery schools and kindergarten experiences, and about how to convey respect for women's work in the home and the rights of disabled children to our own offspring. The open-endedness of prenatal testing as it intersects issues of disability, abortion, and family life affected me, as it affected my respondents, enriching our lives with hard choices, contradictions, and situated knowledge (Haraway 1988b). In social science parlance, I am describing the benefits, as well as the burdens, of reflexivity: I am necessarily (and partly) positioned within the phenomena I seek to understand, and my knowledge depends, in large measure, on the work of social connection as well as on scholarly questions and resources I developed with many others in the course of this study.
Indeed, the boundaries between self and other, or, more properly, several selves—researcher, pregnant woman, teacher, mother, activist, and many others—are inherently blurry. Beyond the rich research materials generated under the conditions outlined above lies another round of informant collection that Michael Agar would describe as "opportunistic" (Agar 1980) and that I would describe as "serendipitous" or "karmic." When old friends and neighbors have amniocentesis or chorionic villus sampling, I call them up. When their friends and neighbors have a question about amniocentesis or a prenatal diagnosis problem, I am likely to receive a phone call in return. Such contacts provide an escalating whirlwind of data that blows through my daily life, and the daily lives of my friends and family members. In the summer of 1991, for example, a friend of a friend of a friend kept me on the phone for a solid hour, obsessing about the lack of statistical data concerning the potential threat to eggs, sperm, and embryos of air-travel-induced radiation. She and her husband were planning a vacation overseas, during which she hoped to get pregnant. She had already called the EPA, the FAA, and the FDA for information, and no one had a clue; could I help her? Information-seeking calls are not infrequent, and in them, I am doubly positioned, trying simultaneously to share what I have gleaned from years of research, and to incorporate the call as research data. My right brain counseled calmly, reminding her of how the heightened concern about low-level radiation had developed, and how little information she could possibly ever collect on the subject for epidemiological reasons: Given the numbers, we can barely say anything about the effects of continual air-travel radiation on the pregnancy outcomes of airline staff, let alone episodic passengers. My left brain made notes on the controlling preoccupations of white, middle-class, scientifically savvy professional women: How could anyone devote this much time and energy to reinventing an old existential question framed in new and unanswerable terms? Only after I hung up the phone did I remember that I had recently crossed the Atlantic twice with a first-trimester fetus in my womb, without thinking to obsess about this particular issue.
A more prolonged connection to the intersection of research and personal life occurred when one of my closest friends became pregnant. As her husband was out of town, I happily attended her amniocentesis "in civilian disguise." She joked about not wanting to bond with the screen fetus while I cracked comments about medico-genetic language and the measurement of pregnancies. "Who are you girls?" the doctor queried in disbelief and annoyance. When the test results were negative, my friend said in scientific resignation and existential consternation, "Well, now I know enough to know that my fetus doesn't have three things. That doesn't tell me very much." I probably shrugged in knowing agreement, both of us amused by her guinea pig status in my study. Using dear friends as informants would have been funnier, however, if their adored new baby had not fallen mysteriously ill in infancy. At the age of six months she was diagnosed as having a rare autosomal recessive genetic condition (Ginsburg and Rapp 1999). To say that I have followed every step of the family's process in coming to terms with a genetic condition with passionate concern might be a bit of an understatement. Their child is a "sister" to my daughter and son. I speak with her on the phone frequently, I posed as the aunt when we teamed up to check out the early-intervention nursery schools funded by the family court for disabled children. Much of what I now believe, and what is most unreportable, I have learned with and from them. My friend once said, for example, to another anthropologist whose analysis of prenatal testing smacked of medical conspiracy theory, implying that the government would support it for eugenic reasons, "Now listen carefully: I give a tenth of my salary to the foundation which funds scientific research on my daughter's condition so they can find the gene that causes this thing. The whole foundation is supported by the families of kids with this condition—it isn't a fancy research outfit bankrolled by the state. And if they found it tomorrow, I don't know if I'd use the prenatal test they'd develop. I don't know if I could do that to my kid, make that statement about the value of her life. It's very complicated."
And complicated data are potentially everywhere. I began to write this introduction on the day that the Development Office at the New School (where I teach) sent a new employee to do a story on my grant research. In preparation for the interview, I sent her some of my recent articles. The young reporter has a sister who is mentally retarded; writing university publicity on my research led her to interview her own mother on the impact the sister's life had had on the rest of her family. In such a situation, we agreed that it is unclear who is interviewing whom, and I incorporated her story into my own. And so it goes. Working "at home" has methodological, ethical, and interpretive consequences that would have been hard to foresee from the places I was initially trained to explore as an anthropologist.
When conducting fieldwork at home, the "outer reaches" of the sample bleed into daily reality. This constitutes both a great advantage for enforced wisdom, and a confusion for sampling parameters. We no longer can picture DNA, genes, or bodies as bounded units; nor are scientific, medical, or political interventions into the people bearing them any less open-ended. This study thus focuses on the constant intersections and boundary crossings that an emergent social phenomena like prenatal testing reveals. It suggests an empirical methodology for studying science in context: The powerful universal explanatory claims and attendant technological interventions of science are continually constructed, crosscut, and sometimes undercut by the social hierarchies, identities, and economies through which "science as culture" is shaped, and its resources distributed and contested. Thus, it is the unbounded nature of science and technology as a powerful congeries of practices that are broadly cultural as well as more narrowly biomedical that has beckoned me toward this open-ended methodology.
This methodology also constitutes ethical problems that bear some discussion. Ethical dilemmas in anthropological fieldwork, in feminist research, and in medically based social science investigations which have at least an implicit (and sometimes a quite explicit) applied and policy edge have been well discussed (Agar 1980; Association 1996; Gluck and Patai 1991; Lather 1999; Stacey 1988, 1990). In recent years, much of the anthropological discussion of ethics has blurred into the postmodernist preoccupation with the politics of text construction: Who is represented, who does the representing, what symbolic violences are associated with citation and silence? (Behar 1993; Clifford 1988; Fox 1991; Visweswaran 1994; Wolf 1992). While I take these questions seriously as I hope to demonstrate throughout this book, they are not the only important concerns which I believe are appropriate to "writing culture," nor do I believe that the scope of power-laden questions anthropologists confront are only text-driven. I have retained a more old-fashioned focus on ethics because I want to emphasize that field-based research in anthropology is much broader than the process of "writing ethnography." The daily problems and choices with which the field worker is confronted have practical consequences for the people whose lives she touches, as well as for her own data collection and interpretation. They include such mundane problems as the protection of confidentiality; language translation and power; the contamination of data through continuous intervention; and paradoxes of feedback and consulting. Each deserves a few words now and will surface again throughout the pages of this text.
The problem of confidentiality is something of an obsession among anthropologists. But styles, of course, change. Whereas once it was considered de rigueur to disguise "my village" but claim "my people," many of us now think that the claims of historical accuracy and the delineation of power relations (theirs and ours) override the conventions of both masking and owning subjects (cf. Association 1996). The topic on which I am working is a highly charged one. It lies at the intersection of personal pain and national political struggles concerning health care, abortion rights, and disability rights; of "the right to informed consent" and the meanings of sexuality, pregnancy, and parenting; of the role that biomedical science plays in a society with no commitment to equal access to health care for all of its members; of the uncertain links between new knowledge generated in genetics research and applications in clinical medicine. Because I was asking people to tell me stories which often felt like crucibles of tough decision-making, I promised and have delivered confidentiality via pseudonyms for any pregnant woman or mother or child or their supporters I have interviewed. Occasionally, I have found it necessary to change or at least generalize some bit of descriptive information (e.g., a highly specialized profession that might have identified someone, or the name of a small town where someone opted for an abortion after receiving a prenatal diagnosis, but told everyone she'd had a miscarriage to avoid stigma) as well. It has been harder to provide anonymity for genetic counselors and other medical service providers, many of whom have discussed hard ethical situations and personal values with me, both on and off the record. Some have been named in the acknowledgments to this book in grateful appreciation of what they contributed to my methodology and sample. Others appear in their professional capacities throughout this text. While general readers of this book won't know or need to know Who's Who in the World of New York Prenatal Diagnosis, it is a small professional world, and speculations, if not positive identifications, may easily abound. I apologize in advance for any discomfort my chosen quotations and generalizations may cause; while I have checked the text with several trusted "insider" colleagues, it is never possible to assure both a consensus on accuracy and fairness, and real confidentiality, in a study conducted in one's own highly literate culture.
A second ethical problem concerns the subject of language. In writing this book, I have constructed a story using medical vocabulary, the words of people I interviewed, and a political language intended to intervene in policy debates and practical pregnancy and child-rearing services available to women and their supporters. Sometimes, I use the language of "polymerase chain reaction," "proband," and "balanced translocation" as aspects of native text construction in the field of genetics, explaining what I have learned of their meanings as I do so. At other times, I have gone to some length to write out the vernacular cadences of West Indian women's anxiety over "choosing" amniocentesis, or the subtle distinctions that Spanish-speaking women use to describe their pregnancies and abortions as "older" women. Social movements for both reproductive rights and disability rights have so influenced my thinking that I cannot use phrases like "birth defect," "fetal defect," "positive diagnosis," "termination," or "therapeutic abortion" without putting them in quotation marks, insisting on the alternative understandings such words muffle, and the biases they project.
The power of language is a theme that runs throughout this book; it is especially relevant to chapters 3 and 4. Attention to this issue immediately raises unsettling questions that range from the practical to the abstract. Practically, can there be "informed consent" without funds for interpreters for low-income patients whose first language is not English? How can resistance to building second-language training into the curriculum of genetic counselor training programs be overcome, given the overwhelming and ever-expanding amount of scientific expertise students truly need to acquire? More abstract issues are also embedded in an analysis of the politics of language. For example, can the specialized vocabularies of science, especially genetics, ever be popularized and democratized, or is this discourse overdetermined to remain highly specialized, hence secret and professionally hegemonic? When should we interpret a pregnancy story self-consciously told in the language of the streets as "resistant" to medicine or social control, and when is it reproducing the relative institutional powerlessness of its teller? The power of speech and silence, technical and popular vocabularies, English and its translations all enter into the ethics of the research and its interpretation reported here.
The ethics of language choice became immediately clear to me when I began observing at Woodhull Hospital in Brooklyn, which serves a predominantly Afro-Caribbean patient population. There, I sometimes found myself translating the genetic counselor's explanations and questions into Spanish or French for recent migrants from the islands. In translating, I was performing a payback service for the pregnant women and counselors who were allowing me to observe their interaction; I was also contaminating my own data collection process, for my translation choices were exquisitely baroque, and often paralyzing, and had to be made in a split second. Was my agenda to make sure the counselor's technical information had been passed on as perfectly as possible? Or was I translating "a woman's right to choose" to use or refuse the test, based on whatever I could glean from the patient herself? Might my goal be to evoke an active, articulated response to the complex issues raised by prenatal testing, so that I might pursue them as part of my own research agenda, despite how unsettling they might well prove to be for the patient? There was no neutral space from which translation could occur.
Later, I realized that this lack of neutrality ran through my interactions at every level. It was hard to listen to myself on the early taped interviews: I talked too much, identified too much of my own experience, reiterated too much of the technical information in what I took to be its most practical format each time I spent a few hours with a woman awaiting amniocentesis results. For many months, I practiced silencing myself in the interviews, thinking I might lessen the contamination of the stories I was collecting. But I was also learning an obvious and painful lesson. I had located myself at the intersection of all the discourses I was studying, and was overcommitted to two contradictory goals. The first, more scholarly and distanced, was witnessing and interpreting the clash of scientific thinking, maternalism, and social analysis inherent in how women recounted their amniocentesis stories. This task was easiest to perform when working with women "like me": well-educated, secular, most likely middle-class, white, and relatively empowered, even in the world of medical services of which they might have significant criticisms. With them, I had at least the illusion that their understandings of biomedical discourse and its complex resources were consonant with both those of health care providers and my own.
The second goal was more activist and engaged, and was often brought into play in interactions with women I perceived to hold less power in the world than I do: Women who were poorer, often lacking in privileged education, and coming from ethnic, national, religious, and racial communities that were as likely to have been the guinea pigs as the beneficiaries of scientific and medical research. Under these circumstances, I was laboring to put medical and scientific resources into a social perspective, and to ensure that the women I was interviewing fully understood the benefits and burdens of the services they were being offered, and the choices they were being forced to make. My role as a teacher was overdetermined. Identifying the contradictions and conflicts in my own role was, of course, one of the hardest lessons I had to learn; college professors don't abandon their lecterns without great effort, and activists always need an audience. While I painfully learned when to hold myself back and when to intervene to give information or suggest how a woman might gain access to needed resources, I also came to accept the inevitable contamination of data that serious interactive feedback entails. The issue was not simply "establishing rapport" with informants. The issue was how might I contribute, in whatever small ways possible, to their empowerment in a world where scientific and medical services are inequitably distributed. Similar ethical problems lie at the heart of many anthropologists' fieldwork experiences. They are necessarily heightened when one (this one) works at home in a culture as fraught with discrimination and inequality as our own.
Contamination of my data also occurred less dramatically (and perhaps more productively) in my interactions with health care providers. It is a truism of fieldwork that if you hang out long enough, the majority of the population on whom you are imposing your research agenda eventually comes to accept and trust you. I remember with both pain and appreciation the afternoon when a genetic counselor whom I'd been observing said, "I'm learning a lot from having you watch me. I respect you as a social scientist and a mother. It makes me more conscientious, having to respond to your questions, knowing you're thinking about what the patient is getting out of all of this." Her compliments signaled the palpable presence of the Heisenberg uncertainty principle—that observation contaminates the very processes it seeks to observe—inside my research terrain.
Over years of participant observation, I have become something of a trusted insider on various genetics teams. Team members have felt free to ask for feedback, and sometimes, quite a bit more. I have therefore occasionally been called in to speak with crisis-racked patients who were in shock and in grief; to advise counselors on how to improve their services; and to provide criticisms of the lack of cultural sensitivity built into some kinds of provider-patient interactions. While, in principle, I might have demurred, insisting that I would provide feedback "once the study is over," in a case like this, the study seemed unending. And the practical needs of service providers and patients are immediate. I know that my interventions have sometimes been incorporated into counseling protocols, influencing things said or unsaid to patients. Such interventions have real effects on both my interactions with health care providers, and on the services whose impact I am observing. I hope they have been modestly effective, as well as effectively contaminating. The ethics of giving feedback in a "real world" situation where access to resources and the conditions of choice are everywhere at stake had to be resolved in a way that was biased toward what I considered responsible application of my accumulating knowledge.
The problems of ethical feedback easily escalate when working in one's home society, accumulating knowledge that bridges the powerful world of highly literate science workers and their frequently less literate and almost always less powerful clients. Soon after my publications on amniocentesis began appearing in medical anthropology and gender studies journals, they were abstracted by the genetics community. I have been privileged to be asked to report on aspects of this study at medically oriented conferences, workshops, and policy meetings of such institutions as the National Society of Genetic Counselors, the Federal Bureau of Maternal and Child Health, and the National Institutes of Health. At first, I was a bit overwhelmed to find myself on the genetics speaking circuit, and always tried to coauthor whatever I presented with colleagues in genetic counseling, both to ensure its scientific accuracy, and so that I would not be perceived solely as a critical outsider. Gradually, I have learned to stand up for my own interpretations, asking health professionals to examine the scientific assumptions that form a part of their own cultural backgrounds. I am honored that my work has seemed valuable, if only to raise controversies and debates, within the world of genetic health services and policy.
But I have also come to be wary of the available slots into which anthropological analyses can be placed in the world of biomedical science. When I began observing counseling intake interviews, for example, I was immediately struck by the neo-Freudian working assumptions many counselors use. When a patient from a radically different linguistic, social, and cultural background than their own was silent, or refused the test, or wouldn't engage in probabilistic thinking, some counselors would say, "She's denying," "She's passive," "She's regressive," rather than looking for the chasms that were separating their own communicative concerns from those of their client. Over time, as I unearthed some of the complex meanings behind silences or refusals, especially as articulated by women whose cultural backgrounds were very different from those of their counselors, some counselors came to rely on the new interpretations I was providing them. But what does it mean to have a counselor now say, when discussing a noncompliant patient, "She's Haitian" or "She's Chinese," rather than "She's fatalistic," as an explanation of behavior she does not quite understand? Has my hard work only served to re-create what Michel-Rolph Trouillot called "the savage slot" (Trouillot 1991), a role impatiently awaiting a cultural occupant, as the new, poor, ethnic immigrants of America's cities become anthropological stand-ins for the tribal peoples my profession once studied? Medical anthropology has always had an applied edge; this is especially true of medical anthropology practiced at home. The ethics of fieldwork must include a constant assessment of the limited benefits and possible harm researchers can do, in situations where racial, ethnic, national, and religious stereotypes are built into communicative and social service interactions across class differences.
In speaking about the ethical tensions that shadowed this study, I have, of course, been speaking about power. Power is inscribed in all aspects of this study: It resides in the increasingly well-funded and metaphor-producing world of molecular genetics (Bishop and Waldholz 1990; Fleising and Smart 1993; Heath and Rabinow 1993; Martin 1992, 1994; Rabinow 1992, 1996; Suzuki and Knudtson 1989). Power is shot through the world of biomedicine, where the cutting edges of genetic research converge with social policy and its translation into inequitably distributed health services. It blasts communicative chasms between health care providers, already stratified by differences attached to gender, education, and often racial-ethnic or national background, and their multicultural, multiclass patient populations. Powerful discrimination segregates the hard-earned knowledge of families raising disabled children with stigmatized differences from much of civil society. And power exquisitely stratifies public, media representations of the complex issues surrounding prenatal diagnosis, abortion rights, prejudice against disabled people, and access to scientific literacy and medical services. Power differences are everywhere represented and enacted in the anthropological methods, data, interpretations, and ethics whose limits I have tried to suggest in this chapter. It is to the discursive and practical consequences of an examination of these power differences in the construction and uses of prenatal diagnosis that we now turn.
|1||How Methodology Bleeds into Daily Life||1|
|2||Accounting for Amniocentesis||23|
|3||The Communication of Risk||53|
|4||Contested Conceptions and Misconceptions||78|
|5||Waiting and Watching||103|
|6||The Disabled Fetal Imaginary||129|
|8||Culturing Chromosomes, or What's in the Soup||191|
|9||An Error in Cell Division, or The Power of Positive Diagnosis||220|
|10||The Unexpected Baby||263|
|11||Endings Are Really Beginnings||304|