On September 19, 2013, Dr. David H. Beyda gave a presentation for the inaugural HOSA (Health Occupations Students of America) distinguished speakers series at Paradise Valley Community College in Phoenix, Arizona. Dr. Beyda is a Pediatric Critical Care Specialist at Phoenix Children’s Hospital, a Professor of Pediatrics at the University of Arizona College of Medicine, and the Founder/Director of Medical Mercy – a medical ministry that delivers basic and advanced medical care to children in extreme poverty around the world.
Dr. Beyda spoke on health care ethics and the underprivileged, particularly in regard to how and why it is so different than what we expect. For example, do you believe health care is a right (something that everyone is entitled to) or a privilege (a special benefit that’s bought or earned and not enjoyed by all)? While most would agree that society has a moral obligation to ensure that everyone has access to at least some level of health care, the reality is that medical resources are limited. Moral distress arises when health care workers know the right thing to do – but constraints such as money, materials, and manpower make it nearly impossible to pursue the right course of action.
Some say that universal access to health care (or lack thereof) says something about a society’s moral character (or lack thereof). But here is the catch: what type of health care will be offered – basic, standard, or platinum level – and who will pay for it? Health care costs are unpredictable and unevenly distributed among people. The elderly and disabled consume a disproportionate share compared to young healthy people. There is a danger in making value judgments and rationing health care when it comes to allocation of resources. Thus, universal health care also carries risks.
Dr. Beyda quoted Daniel Callahan, an American philosopher in the field of biomedical ethics, who claims that the drain on health care resources to extend the lives of the elderly has the effect of violating the rights of the young to live out a normal life span. This is where it gets personal. It may be easy to recommend denying a liver transplant to an anonymous 76-year-old woman. But what if she were your mother? In that case, you would want to make an exception. When it comes to health care, the person and the circumstances can determine how we interpret their position in society.
Societies are often judged on how well they treat those who are less fortunate. As authority figures, health care professionals must be careful not to overuse labels such as “underprivileged,” “poor,” or “handicapped.” By labeling people we denigrate them, consider them less worthy, and diminish their personhood. The potential for abuse falls heaviest on the poorest and weakest among us. Around the world, a history of human experimentation is clear and evident – and it’s still going on today. Although most medical research is legitimate and ethical, there is a “dark side.”
You have probably heard of the notorious Nazi experiments. After World War II, at the Nuremburg Medical Trial, twenty-three German physicians and scientists were accused of performing vile and lethal medical experiments on concentration camp inmates and other living human subjects (prisoners of war) between 1933 and 1945. At the trial, Brigadier General Telford Taylor stated: “The defendants in this case are charged with murder, tortures, and other atrocities committed in the name of medical science. The victims of those crimes are numbered in the thousands…. To their murderers, these wretched people were not individuals at all. They came in wholesale lots and were treated worse than animals.” And yet in his final plea, one of the defendants (Gebhardt) callously contended: “Only the precepts of the law, not the principles of medical ethics can be used to render a verdict.”
At the same time as the United States was prosecuting Nazi doctors for crimes against humanity, the U.S. government was quietly supporting research that placed human subjects – overwhelmingly the vulnerable and underprivileged – at enormous risk. They had been doing so for years prior, and continued doing so through the 20th century (and some say still are)…
- In 1913, 146 children were inoculated with syphilis, and 15 children in St. Vincent’s House in Philadelphia had their eyes brushed with tuberculin.
- In 1939, 21 children living at the Iowa Soldiers’ Orphans home were the subjects of an experiment that used psychological pressure to induce children who spoke normally to stutter, so a prominent speech pathologist could test his theory on the cause of stuttering.
- In the 1940s, 820 poor, pregnant women were administered tracer doses of radioactive iron by researchers at Vanderbilt University working with the Tennessee State Department of Health. This research was the basis for the prenatal iron supplements used today.
- In the 1940s-1950s, researchers from MIT working in cooperation with The Fernald School in Waltham, Massachusetts, fed breakfast cereal containing radioactive iron and calcium to students in a nutrition study for Quaker Oats, to determine how the body absorbed minerals from dietary sources.
- In the 1960s, live cancer cells were injected into hospitalized patients at the Jewish Chronic Disease Hospital without their informed consent. The physician in charge was later elected president of the American Medical Association.
- In 1955-1972, mentally disabled children at Willowbrook School in New York were deliberately infected with hepatitis in an attempt to find a vaccine. A review committee for human experimentation did not exist in 1955, but later, when such a committee was formed, it approved the research.
- In 1932-1972, during the infamous Tuskegee Experiment, hundreds of male African-American tenant farmers were withheld treatment for syphilis, so the U.S. Public Health Service could study the long-term effects of the untreated disease. The victims of the study included numerous men who died of syphilis, wives who contracted the disease, and children born with congenital syphilis.
- In the 1940s-1970s, the Atomic Energy Commission and other federal agencies sponsored 4,000 controversial radiation experiments involving tens of thousands of subjects, many who were not informed that they were test cases.
- In 1995, 34 healthy male minority children ages 6 to 11 were exposed to the neurotoxic drug fenfluramine in an experiment at the New York State Psychiatric Institute.
All of the above make it seem as if those conspiracy theorists who believe the government is poisoning our water supply aren’t so far off base! Whatever happened to the Hippocratic Oath, which was historically taken by physicians and other healthcare professionals swearing to practice medicine honestly and never do harm to anyone? Thomas Rivers, the famed virologist who led the Rockefeller Institute for Medical Research Hospital in New York, wrote in his 1967 memoir: “Well, all I can say is, it’s against the law to do many things, but the law winks when a reputable man wants to do a scientific experiment…. Unless the law winks occasionally, you have no progress in medicine.”
Even today, there are several if not many cases of research being done on poor people in Third World countries. In 2004, the FDA estimated that drug companies angling for FDA approval of their new products were launching over 1600 clinical trials overseas every year. There may be as many as 2500 trials in progress today. Most of these are done with minimal or no informed consent. The human volunteers in foreign countries may be enticed to take experimental drugs with the promise of financial compensation, free medical care, or other charitable offerings. For the pharmaceutical companies, it’s a small price to pay considering the potential profit to be gained from a new drug. However, the developing countries usually do not get to enjoy the benefits of the research – and worse, these drugs can make people sick and cause serious side effects.
There is an ethical dilemma in the fact that so many of these medical studies favor those who “have” over those who “have not.” Everyone has their own merits and their own faults; but the truth is, every person has value and each individual is a human being made in God’s image. Is the potential for saving lives worth risking the lives of others? Where do we draw the line? What if you, your father, or brother were in need of the results of data obtained from such testing? What about the data that has already been obtained from unethical studies in the past, does that make us moral accomplices to the experimenters? Dr. Beyda’s lecture was eye-opening and thought-provoking, leaving it up to each member of the audience to examine their own conscience while considering the answers.