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Which experiment in history exploited people?

Troubling questions about surgeon general nominee Dr. Henry W. Foster Jr.'s knowledge of the "Tuskegee Study" have refocused public attention on one of the most infamous chapters in U.S. medical research.Over 40 years, beginning in 1932, 400 Alabama men -- all poor and black -- were denied medical treatment while the U.S. Public Health Service documented the long-term effects of syphilis. The health service told the men their syphilis was being treated but gave them placebos.During the 1960s, Dr. Foster served as professor of obstetrics and gynecology at Tuskegee Institute -- the focal point of the experiment. He also sat on a local medical board that was briefed about the research in 1969.Last month, a conservative group attempting to block Dr. Foster's nomination accused him of having known details of the experiment some three years before its disclosure sparked public outrage.But Dr. Foster steadfastly maintains that he did not learn about the experiment until 1972 and that he then immediately called for "appropriate treatment" for the subjects.Beyond the questions of what Dr. Foster knew and when he knew it, the controversy underscores an ugly fact: In the name of medical science, blacks have been exploited in numbers that far exceed their proportion in the U.S. population."There are a lot of articles that say African-Americans have a distrust of the medical establishment because of the Tuskegee [syphilis experiment], but I think it's broader than that," says Dr. Vanessa Northington Gamble, a physician and medical historian who is also an associate professor of medicine at the University of Wisconsin Medical Center."There's a long history of blacks and medical experimentation that predated Tuskegee."Tuskegee symbolizes the abuse, but I think that blacks who have never heard of Tuskegee fear experimentation."No one was more misled than a group of parents in Baltimore about 25 years ago who thought they were enrolling their boys in a free Johns Hopkins child-care program.More than 7,000 young boys -- "95 percent from underprivileged Negro families" -- were used as guinea pigs in a three-year experiment that could have branded them as latent criminals for life, according to a story that appeared in the now-defunct Washington Daily News.Funded by the National Institutes of Health, the project extracted blood samples, ostensibly to test for anemia and other medical problems.In reality, the blood was drawn to screen boys with an extra "Y" chromosome, making them XYY males instead of normal XY males. This was done because a theory, which remains unproved to this day, holds that males with the extra Y chromosome are more likely to become criminals later in life.This genetic testing was done without the parents' knowledge or consent, according to the newspaper article.Although men with XYY chromosomes tend to be taller than the norm, it has not been demonstrated to cause any type of psychological abnormality.A similar experiment was conducted on another 6,000 young men, approximately 85 percent of whom were black, housed in (( Maryland state institutions for abandoned or delinquent children.According to the Washington Daily News, the children's confidentiality was not protected and the blood-test results were passed to the courts to use as they saw fit.Because blacks make up 44 percent of all prisoners -- almost four times their proportion in the general population -- prison experimental abuse is more likely to disproportionately affect African-Americans.To more than 100 prisoners in Oregon, there was more than just a potential for abuse. In a sense, the inmates were victims of an age-old fascination -- some would even say obsession -- with black sexual prowess.Between 1963 and 1971, radioactive thymidine, a genetic compound, was injected into the testicles of more than 100 prisoners at the Oregon State Penitentiary to see whether the rate of sperm production was affected by exposure to steroidal hormones.A Dr. Heller (whose first name is not given in the medical literature) noted, "I have a negro [sic] volunteer at present."What befell this "negro volunteer"?"After a novocaine injection, a 1mm cut was made in each testicle. The seminiferous tubercules [which carry semen] were severed by the stroke of a razor blade. . . ."Then, "radioactive thymidine [thymidine H3] was injected into the testicular matrix [testes]. The injection site was marked by a black silk suture."In another prison case, inmates were used in flawed bloodplasma trials between 1967 and 1969 throughout Alabama.The study was managed by Dr. Austin R. Stough at Kilby, Draper and McAlester prisons. According to a New York Times account, there was no informed consent and no accurate records were kept.Dr. Stough was expelled several times from hospitals and prisons after men became sick and died from a variety of diseases stemming from his experiments.At the California Medical Facility between January 1967 and April 1968, prisoners were paralyzed with succinylcholine, a neuromuscular compound. Because their breathing capacity was shut down, many likened the experience to drowning.When five of the 64 prisoners refused to participate in the experiment, the institution's special treatment board gave "permission" for prisoners to be injected against their will.The 1964 Declaration of Helsinki, an international agreement governing medical experimentation, makes an important distinction between research that will benefit the subjects -- therapeutic research -- and studies that will not.Problems occur when dangerous experiments lose their therapeutic nature. They are conducted without the consent of the subject and when patients are not allowed to avail themselves of new therapies, even as they are being experimented on.In 1962, Dr. Chester M. Southam of the Sloan-Kettering Institute injected at least 396 inmates at Ohio State Prison -- almost half of them black -- with live human cancer cells.One of the sponsors for Dr. Southam's research was the National Institutes of Health, which also sponsored the Tuskegee syphilis study.Years later, however, Dr. Southam made a tactical error when he injected 22 elderly hospital patients with cancer cells during experiments at Brooklyn's Jewish Chronic Disease Hospital.He was temporarily stripped of his license for doing to these private patients what he had done to so many prisoners.Thanks to U.S. Energy Secretary Hazel R. O'Leary, the public can now gain a better sense of the extent to which U.S. citizens -- blacks in particular -- were victimized by radiation experiments.The Los Angeles Times revealed from U.S. Department of Energy documents that at least 82 charity patients were exposed to full-body radiation at the University of Cincinnati Medical Center.Exposed to radiation 10 times the level believed at the time to be safe, 25 patients died. Three-quarters -- 61 -- of the patients in the study were low-income black men and women.Also, the New York Times revealed that the consent signatures were forged.At the heart of protection against unethical medical experimentation is the principle of "informed consent." Essentially, that means a person must not only give his or her consent, but must truly understand the risks and possible benefits of participation in an experiment.This principle had long been part of medical ethics, but was codified into the Nuremberg Code in 1947 by the tribunal that judged the Nazi war doctors.As an added layer of protection, the National Research Act of 1972 specifies that every medical institution involved with human experimentation must have an investigative review board.In addition to medical researchers, community representatives also are required to be on that body.Despite these safeguards, abuses continue.When 1.7 million soldiers -- 22 percent of whom were black -- went to the Persian Gulf in 1990, they found that their human rights were the first casualty.The tangled branches of the illness now often called "gulf war syndrome" may have its roots back on American soil. Persian Gulf-bound soldiers were forced to take experimental vaccines under federal law (C.F.R., section 50.23 (d)).The law stipulates that soldiers cannot refuse to participate in the government's medical experiments.For blacks, even death is no protection against being victimized.In Philadelphia, the coroner's office has removed eyes and brains from the bodies of the dead without prior consent or permission from next of kin.Typical is the story of Doris Jackson, who told CBS' "America Tonight" that when her son died in a motorcycle accident in 1987, the medical examiner's office refused to let her see his body. When she was finally granted permission, the brain had been removed. No one had asked for her consent.Ms. Jackson had fallen victim to Pennsylvania's doctrine of "implied consent."This oxymoronic phrase describes a law that assumes the patient or subject has given his or her permission to have organs removed unless there are signed documents to the contrary.The catch is that because so few affected people know about the law, the coroner takes the organs of many people who would have vehemently objected. California, Florida, Michigan, Ohio and Texas have similar laws.Dr. Cyril Wecht, chief of pathology at St. Francis General Hospital in Pittsburgh, says that in Philadelphia, the medical examiner does not tell families of the intention to take the organs, effectively denying them an opportunity to object."If you get a call saying your husband's been killed at work, will you say, 'First thing, I better get in touch with the medical examiner, then I'll call my family, my minister or rabbi'? Who the hell is going to think of anything like that?"Researchers will say that they "harvest" organs without the permission of the family to further medical knowledge. But this is only part of the truth. The incentive for a doctor to take organs without permission is more subtle -- and more powerful -- than cold cash.Inducements take the form of staff privileges and academic appointments."It is rarely in terms of direct payments, quid pro quo. Indeed, the emollients have been direct and far more important, such as obtaining a medical school or graduate school appointment, advancement or promotion," Dr. Wecht declares."Getting your name on research papers, the self-aggrandizement of sucking up to the bigwigs out there. Definitely, those things have been done."Harriet A. Washington is a contributing columnist to Emerge Magazine, from which this article is adapted. She writes frequently on health issues.

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