In the past decade, bioethicists have begun to take the pluralism of American society seriously. Books and articles explore how to negotiate between the universal principles of mainstream bioethics and the specific cultural values, religious beliefs, and health care practices of new immigrant groups. Striking the right balance is difficult. Are physicians obligated to inform Mexican- or Korean-American patients of a terminal prognosis, even though in these groups the family, not the individual patient, bears major responsibility for making decisions about life support? Must pediatricians immediately notify protective services when they see a Hmong child with extensive abrasions and blisters caused by traditional healing techniques? Debates rage over such ethically and politically loaded questions.
In response, some have sensibly called for ethics committees to include individuals acquainted with patients' language and culture. Bringing a cultural expert to the table is an important practical step, but to advance the general discussion, we also need conceptual tools that clarify the background of recent immigrant groups. Too often, debates about cultural sensitivity and universalist bioethics appeal to exceedingly general notions such as "family-centered decision-making styles" that threaten to replace one context-free principle (patient autonomy) with another. They make global predictions about the future of today's immigrants, for example, that as immigrants become wealthier and associate more with the dominant culture, their attitudes will resemble those of middle-class secular Americans of European descent. Just as good bioethics demands good facts, effective responses to cultural pluralism demand detailed knowledge of particular immigrant groups, their recent history, and their own ethical commentaries on illness and healing.
Take the case of Haitian-Americans, who now probably number three times the official 1990 census figure of 292,000. With their marginal status and their ongoing links to their home society, they alert us to the likely points of conflict between new immigrant groups and the American health care system. Haitians have a triple minority status as black, non-Anglophone, and foreign-born. Like other non-European immigrants, they often have tenuous legal rights and are subject to the racial exclusions of American society when seeking housing and employment. However, Haitians generally do not identify with African-Americans or with Latino immigrants, due to differences in language and historical memory. Moreover, ever since the start of large-scale Haitian immigration in the 1970s they have suffered under demeaning stereotypes as alleged carriers of AIDS and tuberculosis, and memories of incarceration, quarantine, and deportation have not faded. Despite impressive educational and economic success, their multiple marginality endures.
Unlike earlier cohorts of immigrants from eastern or southern Europe, Haitian-Americans are fundamentally transnational. Even after residing in the U.S. for many years and becoming American citizens, many people continue to travel to Haiti. They support relatives and run businesses back home, and they participate in a vast two-way exchange of gifts, commodities, audiocassettes and videotapes, newspapers, etc. Such activities create a single social field cutting across national borders and uniting the homeland and the diaspora. As members of a transnational network, Haitian-Americans elaborate a distinctive identity in the U.S. and maintain far-flung social connections. This transnationalism not only helps them resist the types of discrimination mentioned above, but continually replenishes the immigrant community with Haitian cultural resources, including those connected with illness and healing. In Boston and New York, for example, Caribbean grocery stores sell herbal remedies flown in from Port-au-Prince the week before, and migrants can find healing specialists from the three religious faiths of Haiti: Vodoun, Catholicism, and evangelical Protestantism. Haitians in the U.S., like transnational migrants from elsewhere in Latin America and the Caribbean, will probably retain distinctive health care practices even as they enter the American middle class.
Haitians' marginalization as well as their transnational connections inform their encounters with American medicine. What are some dominant issues in health care ethics, from the standpoint of recent Haitian immigrants? The first concerns not a vexing cultural conflict, but rather stigma and its effects. Although the CDC stopped listing Haitians as a risk group for AIDS in 1985 and the FDA lifted its ban on Haitian blood donations in 1990, Haitians remain on guard about this enduring form of marginalization. Moral honor and dishonor, connected to the image of Haitians that circulates among many Americans, is the chief issue here. Health care practitioners must remain (or become) aware of the stakes raised for Haitian patients by blood donations, transfusions, or HIV testing. Haitians' experience of legal marginalization also colors the clinical encounter. Many Haitians have undocumented or irregular immigrant status, and releasing their names and other identifying details to hospital bureaucracies can create fears of prosecution and deportation. New intake protocols—and, more importantly, activism and lobbying to strengthen physician/patient confidentiality for undocumented immigrants—are the key responses to this ethical challenge.
Because of continuous transnational exchanges with Haiti, recent immigrants will seek out health care in ways familiar from home. Haiti has a plural medical system in which people routinely use several different types of healing during a single episode of illness. Similarly, Haitians in urban North America have easy access to herbal medicine, western pharmaceuticals, biomedicine, and religious treatments. This habit of combining different types of therapy results from both simple pragmatism and a specifically religious interpretation of illness. In this healing system, falling sick can lead to pressing questions about one's innocence or guilt. Certain disorders—chronic conditions with no apparent cause and the sudden onset of serious disease in young or previously healthy people—raise suspicions that the patient is the victim of someone's pathogenic jealousy or has brought on the sickness through personal misdeed.
In such cases, people may consult religious healers drawn from the centuries-long mixture of Catholicism and Vodoun. However, they rarely make a dichotomous choice between religious healing and biomedicine. Many times, people actually wish for a biomedical cure, since that would short-circuit the need for more involved therapies. Even after religious healers are consulted, people freely use biomedical treatments, such as antibiotics, to strengthen the patient and ward off other problems in the future. Clinicians can easily resolve the ethical dilemma between respecting religious beliefs and providing the best possible biomedical care simply by framing their work as supplemental to religious healing. In the plural Haitian medical system, very few would refuse this offer.
Surrogate decision-making for noncompetent patients can pose thornier problems. Haitian-American families include many who are geographically distant but intimately engaged with their kin. Entering the principled debate between patient autonomy and consideration of the family's voice requires determining who speaks for the family. For transnational immigrants, do we listen only to people who live within traveling distance of the hospital? What about non-blood relatives such as godparents? What if the roster of family members shifts during the illness, as people move from one to another node of the Haitian diaspora? The answers are far from clear, but even the questions require knowledge about both the cultural beliefs and the social position of today's Haitian-Americans.
Of course, all immigrant groups have their own patterns of marginalization and transnational community, and each will differ markedly from the case of Haitian-Americans outlined here. However, this case does suggest that we treat culture not as a new variable to be fitted into established bioethical formulae, but as a multiple determinant of moral experience in its own right. As recent migrants bring their own ethical concerns to encounters with American health practitioners, they will push the discussion of cultural sensitivity and universalist principles in new directions, illuminating both their evolving place in American society and the new terrain of pluralist bioethics.
Paul Brodwin is associate professor of anthropology at the University of Wisconsin-Milwaukee. He is the author of Medicine and Morality in Haiti.