IMMIGRATION, ETHICAL AND HEALTH ISSUES OF

As of March 2000 it was estimated that approximately 10.4 percent of the United States population, or 28.4 million individuals, were immigrants. Prior to 1965 the majority of immigrants came from European countries, such as the United Kingdom, Greece, Poland, Portugal, Germany, and Ireland. Since then, however, an increasing number of immigrants has come from Latin American, Asian, and Caribbean countries, including El Salvador, Colombia, Vietnam, China, Haiti, and the Dominican Republic.

Individuals may seek to enter the United States for any number of reasons, including a desire to reunite with family members, the acceptance of a new employment opportunity, or a need to leave one's country of origin due to persecution. The majority of individuals entering the United States from other countries do so legally, through established immigration procedures. Others enter illegally, oftentimes in search of a safe haven from persecutors.

Findings relating to the health of immigrants have been inconsistent, in part due to reliance on different definitions of immigrant. For instance, some studies consider the health or illness of all foreign-born individuals, regardless of the legality or duration of their residence in the United States, while others may examine either the health of those who are here legally or of those who are here illegally (Loue and Bunce). Some studies have utilized the term newcomers to encompass those who are here permanently and temporarily, as well as those who are here legally and illegally (Smith). Refugees who are seeking safety from persecution within their own countries may be considered separately, or they may be included in broader discussions relating to immigrants.

Morbidity and Mortality

The risk of morbidity and mortality varies by immigrant group and by disease. In general, the health problems of immigrant populations mirror those that are prominent in the countries from which they have come. For instance, between 14 percent and 20 percent of Indo-Chinese refugees carry hepatitis B, and up to 15 percent of Southeast Asian refugees may be chronic carriers of the infection. This is not surprising in view of the fact that hepatitis B virus is endemic in many Asian countries (Tong and Hwang). During the period from 1986 through 1994, the rate of mycobacterium tuberculosis was four times higher among foreign-born individuals than among those born in the United States. Because more than half of the cases among the foreign-born were diagnosed less than five years after their arrival in the United States, it appears that imported tuberculosis is responsible for the majority of tuberculosis cases among immigrants in the United States (Zuber, McKenna, Binkin, et al.).

However, a number of studies have found that immigrants to the United States may experience lower rates of mortality than persons who remain in the sending countries. In addition, immigrants' risks of smoking, substance use, obesity, hypertension, and some forms of cancer are lower than the risks experienced by United States-born individuals of equivalent demographic and socioeconomic backgrounds. It has been hypothesized that this health advantage may result from a self-selection for immigration by healthier individuals (Swallen). However, for a number of immigrant groups, the risk of these illnesses appears to increase with increasing length of residence in the United States (Frisbie, Cho, and Hummer).

Immigrants may be at particularly high risk for a variety of occupationally related illnesses. Many may be able to find employment only in sweatshop-like conditions or in agricultural work where they may face continuous exposure to pesticides and herbicides, generally without adequate protection (Stephenson).

Women who immigrate to the United States may experience a number of gender-related health problems. Women may suffer significant trauma during their transit to the United States, including sexual assaults and forced labor (sometimes in the form of sexual slavery). Once they arrive in the United States, they may confront additional gender-related problems. For instance, many immigrant women are more willing than their male partners to accept low-paying jobs in order to support themselves and their families. Once they become wage earners, they may be introduced to North American conceptualizations of gender roles. Their male partners may, as a result of their own unemployment, feel threatened by what appears to be a shift in the power structure within the family due to their inability to earn a living and their partners' newfound independence. For some women, these changes in family structure have been associated with an increase in domestic violence. Still other immigrant women may become subject to abuse by spouses or boyfriends who are United States citizens or legal permanent residents. These men may have promised to file immigration papers on the women's behalf, but failed to do so. The women may be afraid to leave their abusive partners or to report their abusers to law enforcement authorities because of their own illegal status and the consequent fear of deportation. Often, the women may be financially, as well as legally, dependent on their abusers, so that it becomes difficult for them to leave these situations. Specific provisions in U.S. immigration law now permit abused immigrant women in such situations to file petitions on their own behalf so that they will not have to remain captives in abusive relationships.

Barriers to Care

Immigrants may be reluctant to rely on Western-style medicine due to differing traditions of symptom identification, diagnosis, and healing. Additional barriers are presented by language differences and the relative unavailability of competent interpreters, by transportation difficulties, and by providers' lack of familiarity with the healing beliefs and practices of their immigrant patients. For example, a study of the utilization of mental health services by a sample of Mexican Americans in Fresno County, California, found that those who were born outside of the United States had a utilization rate that was only two-fifths that of the Mexican Americans born in the United States (Vega, Kolody, Aguilar-Gaxiola et al.). This differential utilization rate may have been attributable to the nonexistence of Spanish-speaking mental health professionals, a lack of insurance, the lack of a regular doctor or course of care, or to physical isolation in rural areas.

Southeast Asian immigrants have been found to have the lowest levels of Pap testing of any racial or ethnic group in the United States. A recent study of Cambodian immigrants found that barriers to the use of the Pap test included a traditional orientation to the prevention, causation, and treatment of disease; a lack of familiarity with Western concepts of early disease detection; low levels of knowledge about cervical cancer; concerns about the Pap test procedure; and difficulties with transportation and language interpretation (Jackson, Taylor, Chitnarong et al.).

Immigrants, both those who are in the United States legally and those who are not, must often confront a patchwork of federal programs that, despite their number and complexity, often do not assure access to necessary care. The Centers for Disease Control and Prevention (CDC) oversee specific programs for infectious diseases. The CDC is also responsible for the review of applications for waivers from those immigrants seeking legal entry who may be excludable from the United States pursuant to legal provisions prohibiting the entry of those with specified diseases, such as active tuberculosis, various sexually transmitted diseases, and various forms of mental illness. The Office of Refugee Resettlement of the U.S. Department of Health and Human Services provides funds to the CDC to oversee the infectious disease programs. The Migrant Health Program also provides some funding for preventive services and immunizations.

Numerous federal and state laws place restrictions on immigrants' ability to access care that is publicly funded. In 1994, for instance, California's Proposition 187 severely curtailed the ability of individuals who were in the United States illegally to obtain publicly funded care and required that specified agencies and healthcare professionals report these individuals' presence to the Immigration and Naturalization Service. Although numerous portions of the law were ultimately found by the courts to be unconstitutional, researchers noted a 5 percent decrease in the number of clients appearing at clinics for the diagnosis and treatment of sexually transmitted disease immediately following the law's passage (the law was not implemented because it was immediately enjoined by the court). Approximately 25 percent of these individuals indicated that they were in the country illegally (Hu, Donovan, Ford, et al.). A similar decrease was noted in the number of individuals presenting for other medical services (Marx, Thach, Grayson, et al.). The possibility that physicians and other healthcare professionals would report their patients' illegal presence to government authorities raised significant ethical concerns about the imposition of conflicting loyalties, the breach of physician–patient confidentiality that would attend such reporting, and the potential threat to public health as a result of delays in seeking care due to fear of disclosure (Ziv and Lo).

Despite several amendments since their original passage, the provisions of the 1996 Personal Responsibility and Work Opportunity Reconciliation Act (commonly known as the Welfare Reform Act) and the Illegal Immigration Reform and Immigrant Responsibility Act (IIRAIRA) continue to severely restrict the ability of even legal immigrants to rely on publicly funded medical services, apart from emergency medical needs and the diagnosis and treatment of specified infectious diseases. The legislation has engendered significant controversy because many of the immigrants who are denied publicly funded care, such as Medicaid, actually pay into the system through their taxes. In addition, many states have not adopted state legislation that would permit immigrants to rely on publicly funded care when they do not have privately funded health insurance. This is particularly problematic for women of childbearing age, who may not have the funds or the private insurance to cover the costs of prenatal care, labor and delivery services, or care for their newborns.

Within those states that have implemented legislation permitting immigrants to receive publicly funded care, many may still be denied access to recommended treatments. In New York, which has been one of the most forward-thinking states in the provision of publicly funded health services to immigrants, a panel consisting of physicians, medical ethicists, and AIDS advocates charged that physicians are withholding certain HIV-related treatment regimens from immigrant patients in the belief that they will not adhere to the recommended regimen (Newsline People AIDS Coalition New York).

Both the Welfare Reform Act and IIRAIRA limit the ability of immigrants, whether legal or not, to utilize other types of publicly funded services, such as food stamps. The impact of welfare reform has thus disproportionately affected immigrant groups. For instance, although noncitizens represented only 9 percent of the households receiving welfare, they accounted for 23 percent of the total decline in welfare caseloads following the enactment of these laws (Fix and Passel).

Healthcare providers also face difficulties due to the limitations imposed on access to public funds by federal laws. Hospitals are required by the federal Emergency Medical Treatment and Active Labor Act (1986) to provide emergency medical care to those presenting for such care, regardless of their legal status in the United States (Galloro). There may be an ethical, as well as a legal, responsibility to care for those presenting at emergency departments with life-threatening situations. The hospitals are not reimbursed by the federal government for the full cost of these services, although the federal government is responsible for the enforcement of the immigration laws, and many of the injuries that are treated result directly from dangerous attempts to cross the border. As a result, many hospitals in border areas are experiencing critical losses in revenue due to uncompensated care (Galloro). Of the five states that are most impacted by illegal immigration (California, New York, Texas, Florida, and Illinois), two have unsuccessfully sued the federal government in an effort to obtain reimbursement for the costs incurred in providing uncompensated care to illegal entrants.

Negotiating the Provider– Patient Relationship

Numerous issues may arise in the context of the provider– patient relationship due to differing beliefs regarding, and experiences with, such relationships, concepts of autonomy, and understandings about disease and illness. Some patients may have come from countries in which medical practitioners functioned as agents of the government, reporting to law enforcement officers the names of patients whose illnesses may have been related to illegal activities (e.g. sexually transmitted diseases that may have resulted from extramarital sexual relations or commercial sex activities, or pelvic infections resulting from illegal abortions). Others may have experienced torture at the hands of government-employed medical professionals. Not surprisingly, such experiences may hinder the patient's willingness and ability to divulge sensitive information to a healthcare provider. A lack of provider sensitivity to this possibility may inadvertently exacerbate the difficulty of communication. Even patients who have not experienced such trauma may feel reticent to discuss deeply sensitive issues due to perceived disparities in power between the healthcare provider and the patient.

Western medicine emphasizes the importance of self-determination and autonomous decision making in the context of medical care. However, some immigrant patients, and particularly those from non-Western cultures, may conceive of the individual not as an autonomous and disconnected entity, but rather as a function of the roles that one maintains in relation to those around one, such as extended family members and community members. In such instances, the patient may want the healthcare provider to discuss the details of his or her situation in as much, or even more, detail with the family or community members as with the patient. For instance, the patient may believe that the entire family should be involved in a decision to undergo chemotherapeutic treatment for cancer. Other patients may not want to know their own diagnosis, but may want family members to be fully informed.

The use of interpreters may also present challenges. At the most basic level, English phrases or terms may not be easily translatable into the language used by the patient. Other aspects of the interpreting function, however, may be more subtle and, consequently, more difficult to remedy. Differences in social status between the interpreter and the patient may influence the quality of the communication in ways that are not obvious to the healthcare provider. Interpreters may also incorporate their own beliefs and agendas into the communication. For instance, family members who serve as interpreters may inadvertently or intentionally minimize or exaggerate aspects of the information to be communicated.

Providers cannot realistically be expected to understand and be familiar with every possible culture and language. Providers may find it helpful, however, to consult with professionals in community-based organizations and agencies who have experience working with particular cultures. Family members of patients may be willing and able to provide additional background, particularly when it is clear that the provider is making a sincere effort to understand his or her patient.

Issues in Health Research

Immigrants may also face significant difficulties in the context of health research. For instance, many clinical trials do not provide care to trial participants. In such cases, examinations are provided only for the purpose of the trial and individuals are advised that they must consult with their own physicians for any necessary medical attention. In some cases, individuals are excluded if they do not have health insurance of some sort or if they do not have a regular provider of care. As a result, many immigrants may be ineligible for participation in a research study because they do not have employment-based health coverage, because they do not earn a salary that is sufficient to cover the costs of health insurance, or because they do not have a regular provider of care. In addition, many studies may limit participation to speakers of English, and those immigrants who have not yet mastered the language may be excluded from participation. Individuals may also be excluded due to the instability of their legal status and residence, in part because of the possibility that follow-up with them during the course of the study will be difficult and costly.

As in the clinical context, the development of a satisfactory informed-consent process for use with immigrant participants may require significant attention to ensure that the information provided to participants is understandable, both in terms of the language used and the sophistication of that language. An appropriate process may require, depending upon the culture of the participants, that the participant's family members or community members be engaged at some level. For example, information may be provided to the male head of the household, in addition to the prospective participant, so that the prospective participant can discuss the study with him. This does not, however, obviate the need for the individual consent of the participant.

As noted above, many immigrants may face extraordinary obstacles in attempting to obtain medical care. As a result, the offer of financial compensation or medical care in conjunction with participation in research may inadvertently place undue pressure on immigrants to agree to participate.

In the United States, immigrants have not traditionally been conceived of as constituting an especially vulnerable class of persons in need of special protections in the context of research. However, many of the characteristics of at least some members of this population may render them especially vulnerable. Poverty, lack of access to care, illiteracy, traumatic experiences, language, and illegal status can all have an effect in this regard. It is significant that Uganda has taken official note of these circumstances and has designated refugees as a class as being especially vulnerable and in need of special protections in the context of research. To address this situation, Ugandan institutional review committees reviewing proposed research that will involve refugees must include in its membership at least one individual from an agency whose primary responsibility is attention to refugee concerns, as well as a representative from a human rights organization.

sana loue

SEE ALSO: Human Rights; Justice; Medicaid; Organ and Tissue Procurement; Population Ethics: History of Theories; Public Health Law; Race and Racism; Warfare

BIBLIOGRAPHY

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