AIDS:
Confidentiality, Research, and the Christian Response

Jessica L. Yoder


Thesis: The recent AIDS epidemic has introduced a whole new realm of ethical questions to society, forcing us to rethink some of our pre-conceived notions about mandatory testing for HIV, experimental research in Third World countries, and homosexuality.

I. Introduction

A. Since its arrival in the mid-70's, HIV has spread through the homosexual and heterosexual populations alike.
B. People of color are more likely to become HIV+.
C. AIDS is a hot topic on college campuses.

II. Health Care Workers

A. What is the risk of passing HIV from the caregiver to the patient?
B. What is the risk from patient to caregiver?

III. Protective Laws

A. Several anti-discrimination laws from the past help uphold the rights of
HIV+ persons.
B. Despite these laws, people still are fired, evicted from their apartments, and denied health insurance.

IV. Mandatory Testing

A. Some institutions already require testing.
B. Insurance companies that require HIV tests are becoming more common.

V. AIDS Research in Third World Countries

A. The rules for conducting research on humans are very strict about never using people as a means to an end.
B. The study which tested the effectiveness of zidovudine in preventing mother-to-fetus transmission of HIV in various third world countries did not conform to these standards.
C. The flaw in this experiment can be compared to the Tuskagee Study of Untreated Syphilis.
D. If we let unethical research like this continue, we open the door for further exploitation of these countries.

VI. Homosexuality's Connection with AIDS and the Christian Response

A. AIDS is a very real threat in the homosexual community.
B. How should the church respond to homosexual AIDS victims in light of its views of homosexuality?
C. It has been said the AIDS is God's punishment to gays.
D. Should Christians continue to advocate abstinence or is it better to promote safe sex with condoms?

VII.Conclusion




I. Introduction

Acquired Immunodeficiency Syndrome, or AIDS, has been described as the "single most fascinating legal, medical, and ethical issue that has arisen for ages (Allen, 1985). Unlike most other diseases, AIDS is often associated with people whom are seen as morally defective and blameworthy, homosexuals and intravenous drug users for example. For this reason and others, the recent AIDS epidemic has introduced a whole new realm of ethical questions to society, forcing us to rethink some of our pre-conceived notions about mandatory testing for HIV, experimental research in Third World countries, and homosexuality.

The AIDS virus is believed to have reached the United States from Africa in the mid-1970s. At first the virus spread most rapidly among the gay community. Hence, the disease was politicized from the start because it was termed the "gay-related immune disorder" until the 1980's when it became clear that the disease was becoming a serious concern within the heterosexual community as well. Today there are at least one million cases of AIDS in North America and still thousands more people who are unaware that they are HIV+. The majority of cases are still seen among homosexuals and intravenous drug users, but the annual rate of homosexual infection has just started to decline in the last couple of years (Kelly, 1996). Fortunately, AIDS has not exploded into the general population, probably due to traditional sexual practices among many Americans (Satinover, 1996).

Minority groups are 3 to 21 times more likely to get AIDS depending on gender, geographical location, and drug use (Kelly, 1996). Although blacks and Hispanics make up only 20% of the population in the U.S., they account for 37% of the male AIDS victims and 73% of the female victims. The heterosexual norm in these communities feeds the belief that if they are not gay men, they do not have to worry. In addition, there are few effective AIDS awareness programs in these minority communities. After a person of color has been diagnosed with AIDS, their life expectancy is only 19 weeks on average. However, if a white person is diagnosed on the same day, their life expectancy is two years for various reasons (Davies & Haney, 1991). Such is the unjust world we live in.

College students are taking extra precautions in response to the AIDS scare. Most campus health centers offer confidential HIV testing in which the results are shared only with the doctor and the patient. It has become common practice to get tested between sexually active relationships. As one student puts it, " 'People just come out and say, "Have you been tested for AIDS?' " There is reason to be so bold when 3 in 1,000 blood samples at big universities result in a positive test. Unfortunately, these figures are probably on the low side because the antibodies that are detected by the test are not built up within two to six weeks after infection, so the most recently infected students will receive false negative test results (Kelly, 1996).

II. Health Care Workers

Because HIV is passed through body fluids, it is reasonable to be concerned about the contraction of the virus in an environment where there could be direct contact with blood such as in a hospital. There are documented cases where a healthcare worker passed the disease to a patient he or she was caring for, and cases where an HIV+ patient passed the virus to a healthcare worker. The issue was publicized in the early 1990s when reports emerged implicating a dentist in Florida of purposefully infecting several individuals with HIV. Whether his motive was to heighten awareness to the AIDS crisis or to incur vengeance remains unknown due to his death a year before the infections were ever traced to him. Despite this incident, the American Dental and Medical Associations still support the right of the infected healthcare worker to practice as long as they use proper protection (Kelly, 1996).

There are no laws that protect the HIV+ healthcare worker unconditionally. The Rehabilitation Act of 1973 states that an employer cannot discriminate against an employee if the problem is disabling. However, if there is fear of contraction of a contagious disease, the employee is not protected. The conditional part of this act creates a gray area that employers must interpret on their own, taking into account all of the requirements of the infected employee's position. For example, telephone repairpersons generally work in pairs on the job and share the same tools. Often they work with open cuts from the wires on their hands. In a case like this, the employer has the right to remove an HIV+ employee from this position in order to ensure the safety of the other employees (Moglia &Knowles, 1997).

The risk of passing HIV from a patient to a caregiver is very small. Most often the mode of transference is by sharp objects such as needlesticks. The annual risk for a nurse is 0.00002% and 0.00004% for a custodian working in a healthcare facility (Henderson, 1995). By 1994, 42 cases of patient to healthcare worker had been reported in the United States. In all of these cases the needlestick was due to carelessness and could have been avoided (Kelly, 1996).

III. Protective Laws

Since the emergence of AIDS in society, laws have been created and extended to protect the rights of HIV/AIDS people. The social stigma attached to this disease is so great that special protection for infected people is necessary. Before AIDS was even known to exist, the Civil Rights Act of 1964 protected citizens from discrimination on grounds of race, gender, religion, and ethnic background. In 1973 the Rehabilitation Act extended the same protection to disabled citizens. The Fair Housing Amendments Act of 1988 protects against discrimination in public and private residential housing based on the same grounds. In 1990 the Americans with Disabilities Act required the removal of all barriers to employment, transportation, entertainment, telephone use, and access to public places, including schools and colleges, to disabled citizens, including people with HIV/AIDS. However, as mentioned before, an employer can reject an applicant if the disability is a "direct threat" to the health and safety of others on the job (Moglia & Knowles, 1997). Together these four laws provide some protection for people with HIV/AIDS. Nevertheless, despite these laws, people with AIDS continue to lose their jobs, are evicted from their apartments, and are denied life and health insurance. In some instances, lawyers have deliberately delayed court cases so that a very sick AIDS patient dies before the lawsuit is ever settled. Until these injustices are eliminated, the fight for equal rights for people with AIDS must continue (Moglia & Knowles, 1997).

IV. Mandatory Testing

Mandatory testing for HIV has been controversial since the discovery of HIV in the mid-80s. For some people it is seen as an invasion of a one's right to privacy, but others like George P. Smith have little sympathy for the plea for individual rights, believing that mandatory testing will promote the greatest good to the most people. Testing for HIV is already mandatory in some settings. The test is required in more than half of the States to obtain a marriage license (Kelly, 1996). Why? The Dean of the School of Public Health at the University of Michigan expresses her opinion, " 'The people whose behavior puts them at highest risk are among the least marriage-prone group I can think of.' " (Smith, 1989). HIV tests are also required to serve in the military and to serve in other government positions such as the Peace Corps and the National Guard. A positive test is grounds for denial into the program (Moglia & Knowles, 1997). A 1993 vote in Congress reaffirmed the pre-existing law that made it impossible to get an immigrant visa if you were HIV+. The international community is angered by this law that in effect discriminates against infected people of other ethnicities. However, two-thirds of Americans favor such a ban, as shown by public opinion polls (Kelly, 1996).

Insurance companies pose a unique problem for AIDS rights activists because the very nature of the companies encourages financial discrimination against those who are unhealthy. AIDS is always fatal and is extremely costly to treat, so insuring someone that is HIV+ is a huge liability for the insurance company to undertake. In some states there are laws that prohibit the use of test results to deny coverage to a client (Allen, 1985). However, several large insurance companies have started a trend that is sure to catch on. These companies deny coverage completely to applicants who test positive for HIV. Then current at-risk policy holders are readily identified because HIV+ clients tend to opt for plans that double the average coverage. They are then asked to submit to an HIV test. If they refuse to comply, their coverage is immediately dropped. Many people do not agree with this policy, saying that the insurance companies should pick up the brunt of the cost. In 1988, 40% of all AIDS patients had their bills, totaling $6 million, covered by federal and state monies. In 1992 the cost was predicted to skyrocket to $2.6 billion dollars, and the numbers no doubt have continued to rise since then. Insurance companies ultimately impose this financial burden on the taxpayers so they can make a better profit (Smith, 1989).

V. AIDS Research in Third World Countries

Conducting AIDS research furthers our understanding of the virus and brings us closer to finding a cure for this dreaded disease. However, care must be taken so that in furthering the advancement of science we do not exploit the rights of the individuals who agree to be the subjects of our studies. When testing a new drug treatment, researchers are encouraged to follow traditional experimental practices which include randomized, double-blind, placebo-controlled procedures. Scientific journals put tremendous pressure on researchers to adhere to these guidelines by refusing to print findings that are acquired in an alternative fashion (Angell, 1997). There is one pre-condition to this rule. The World Health Organization states in the Declaration of Helsinki that a placebo should be used only if there is no known effective treatment already. It is unethical to deny the control group the best known treatment to date because the health of participants in a study should always come before the goals of the research. Otherwise, the researcher views the patients as means to an end. It can be very tempting for researchers to disregard this rule when the knowledge gained from a placebo-controlled experiment would be much more valuable and contribute more directly to a faster cure. Extra care must be taken when conducting tests in Third World countries because of the imbalance of knowledge and authority between the researcher and the test subject (Angell, 1997).

A recent study conducted in sixteen Third World countries violated the aforementioned ethical principle. The goal of the study was to find a more cost-effective dosage of zidovudine, a drug proven to reduce the incidence of HIV transmission from the mother to the fetus by two-thirds. When administered during the pregnancy and during the birthing process, the drug saves one of seven babies born to HIV+ mothers. In the United States all study groups have access to this drug. However, in fifteen of the sixteen Third World countries where this study was being carried out, the control groups received no treatment. As a result, hundreds of newborns in the control groups contracted the deadly virus unnecessarily (Lurie & Wolfe, 1997).

One common justification used by the researchers was that the women would not have received antiretroviral treatment anyway if the study had never been done in the first place. This is not a viable excuse because local care in these countries is limited by the extremely high cost of drugs such as zidovudine. Drug companies provide their product free of charge for studies of this kind, so it is wrong to withhold these normally expensive drugs that are designated by the drug companies for all of the test subjects (Lurie & Wolfe, 1997).

A second justification is that placebo-controlled experiments are the fastest way to obtain unambiguous information about the experimental dosage being tested. While there is some truth to that, one of the studies in the sixteen countries proved that it is possible to uphold the integrity of the research without sacrificing the results. In Thailand all of the women in the control group received the accepted dosage of zidovudine at the time and the experimental group received three shorter doses. The researchers were still able to compare the effectiveness of the different dosages, but hundreds of newborn deaths were avoided in the control group (Lurie & Wolfe, 1997).

This study of perinatal transmission of HIV is reminiscent of the Tuskagee Study of Untreated Syphilis that took place from 1932-1972 in the southern United States. To carry out this study, 412 poor African-American men with untreated syphilis were compared to 204 healthy men with the purpose of following the natural history of the disease. The initial goal was in itself not a problem. The study became unethical only after penicillin was proven midway through the study to be effective in treating the sexually transmitted disease. Unaware and uninformed, the infected men continued to suffer much like the women from the control groups in the zidovudine study settled unknowingly for less than the best (Angell, 1997).

Third World research is looking more and more attractive to researchers as restrictions here get tougher. In order to maintain integrity in our research, however, researchers need to perform the studies under the same guidelines that they would use if it was being done in the country sponsoring the research. If we deny the Third World the best care and leave them only the local care as was done in the study described above, we open the door to further exploitation of the people living in these disadvantaged countries (Lurie & Wolfe, 1997).

VI. Homosexuality's Connection with AIDS and the Christian Response

Since its origin in this country, AIDS has been stigmatized as a homosexual disease. It is true that the incidence of AIDS is higher in the homosexual community than in the heterosexual community, in part because of promiscuous relationships that have been quite common among many homosexuals. The 1986 Hastings Center Report reported that many homosexual AIDS patients have over 1,000 sexual partners in a lifetime. One-third of all male homosexuals have more than 50-70 sexual partners per year (Sider, 1998). These figures support the statistic that 30% of all 20-year-old gay men will be HIV+ or dead by the time they are 30 (Satinover, 1996). Ronald J. Sider stresses the importance of recognizing the connection between homosexual promiscuity and the transmission of AIDS. This awareness does not signify homophobia, however (1998).

James B. Nelson, a well-known sexual ethicist, makes a liberal claim that our Christian tradition of compulsory heterosexuality has contributed significantly to the AIDS crisis in the homosexual community. By not permitting permanent forms of gay commitments in the church such as marriage, Christians are, in fact, encouraging promiscuity among the gay community. A more moderate proposal calls for an end to all promiscuous relationships in both the homosexual and heterosexual communities (Sider, 1998).

What should the Christian response to the AIDS crisis be in light of the beliefs about homosexuality that have been passed down to us through the church? Sider encourages us to make love and support at all costs our resounding call (1998). The church has several significant roles to play at this time. First of all, the church must set an example of love and compassion. There have been several bad examples recently that have shown churches how not to respond. Members from one Florida church barred HIV+ people from worshipping with them and led the protest to ban three hemophiliac boys who were HIV+ from school. A conservative group, the Moral Majority, is known for preaching on the sanctity of life when it comes to abortion, but lobbies for less money to go toward AIDS research. A second role of the church is to provide ministry to AIDS patients and their families. One must be careful not to denounce homosexuality when ministering to AIDS patients. Such insensitivity is far from the way that Jesus would have related to these people. Finally, the church should make AIDS education one of its missions. There is a real need for knowledgeable people to go into high risk urban areas to educate people about how to make wise choices (Sider, 1998).

Christian healthcare workers will often be in positions where they are expected to care for homosexual AIDS patients. Unsure feelings about homosexuality may make some people hesitant to help. Nonetheless, Christians have been taught to love the sinner even if they hate the sin. This means that we are called to diagnose accurately, treat compassionately, and speak out against risky sexual acts. Let us not be the so-called Christian who gives minimal care with no empathy (Harrison, 1989).

The common misconception about AIDS that has been circulating around religious circles ever since it emerged in the United States is that AIDS is God's punishment to gays. This theory doesn't stand up to much scrutiny for several reasons. AIDS is not just confined to homosexuals. AIDS afflicts innocent babies and people who received infected blood transfusions in the past. Furthermore, specific diseases are not linked with specific sins in the Bible. As somebody once quipped, " 'If AIDS is divine punishment, then surely the people who bring us economic oppression, environmental pollution, and devastating wars should at least get herpes.' " (Sider, 1998)

The ongoing debate right now is whether encouraging condom use or abstinence is more effective in preventing the spread of HIV. The Mormon church along with many other denominations fear that condoms are a false solution to a critical moral problem (Smith, 1989). Other people support the campaign for condoms, but take issue with the way the condom advertisements promote the product. Sider asks which is more effective: a glamorous woman saying she wants love but isn't willing to die for it or a person in the final stages of AIDS pleading not to make the same mistake he or she did? (1998) These are questions we must grapple with if we are to find a way to combat AIDS.

VII. Conclusion

AIDS is a recent development, a disease that generations before us were completely unaffected by. For this reason, our generation must set our own standards in dealing with the legal, social, and medical aspects of AIDS. Because of the great social stigma attached to the disease, we must take extreme measures to ensure that individuals with the disease are treated fairly and that discrimination against people with HIV/AIDS is eliminated. Similarly, when conducting research in the Third World to further our understanding of the disease, it is imperative that we treat our subjects with the utmost integrity, for they, like everyone else, deserve the best treatment the modern world has to offer. Let our actions be guided by Christ's example when dealing with people with AIDS, for as Sider says, "God loves him or her so much so that if it were necessary for Jesus to experience the cross again just for that person, he would gladly do it." (1998)


Works Cited

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Smith, G.P. (1989). The New Biology. New York: Plenum Press.