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Some eugenics patients died after surgery
By Kevin Begos © WINSTON-SALEM JOURNAL North Carolina's eugenic sterilization program experimented on patients, damaged lives and it ended some, too, according to documents released to the Winston-Salem Journal last week. In the 1930s a "single white female, age 21 years, died from post-operative intestinal obstruction ten days after" her sterilization operation. Another 30-year-old married woman died two days after her operation, and a 17-year-old girl died from "locked bowels" (accompanied by gangrene) five months afterward. Gov. Mike Easley set up a committee last week to investigate the eugenics program and consider reparations or counseling services for victims. The program sterilized more than 7,600 people from 1929 through 1974. Many operations were done against the patients' wishes and some were performed on children as young as 10. For years painful memories of the program haunted whole families, another document shows. A 1951 entry from minutes of the Eugenics Board of North Carolina concerns a sterilization petition for a 14-year-old girl whose mother and grandmother had also been targeted by the program. "The maternal grandmother was feebleminded. Permission was granted for her sterilization. She died under the operation. Arrangements were made to sterilize (the) mother, but after the death of the grandmother, the operation was dropped." Other victims struggled to cope with experimental operations. "One white female was sterilized by X-ray and one by radium implantation," and the woman given the implant complained in a follow-up, "Now suffer from high blood pressure and hot flashes." The woman was "not satisfied" with the outcome of the sterilization, the follow-up says. The disclosures about the North Carolina program come from a study conducted in 1940 by Eleanor Welborn, a graduate student at the University of North Carolina at Chapel Hill, and from more than 1,400 pages of documents that were released by the N.C. State Archives. With the cooperation of the eugenics board, Welborn did a follow-up survey of 183 non-institutional sterilization cases in North Carolina. She wrote that "three patients ... died from intestinal obstruction shortly after the operation, and a number of patients stated that they had certain health or sex problems which they believed to be the direct result" of the operation. The official cause of death for the woman who died two days after her operation was listed as pneumonia. Welborn wrote that "there is a real need for follow-up physical examinations of sterilized persons at regular intervals ... to aid the patient in combating any effects of sterilization which may damage their health or even endanger their lives." Carmen Hooker Odom, the secretary of the N.C. Department of Health and Human Services, is head of the Eugenics Study Committee, which met for the first time Thursday. It could make recommendations to Easley as early as May or June. "This just gives another reason why we should be dedicated to making sure we figure out what is fair and just for the victims," Hooker Odom said about the deaths and the experiments. Paul Lombardo, the director of the program in law and medicine at the University of Virginia Center for Biomedical Ethics, said that abdominal surgeries - including sterilization operations - were much riskier before a wide range of antibiotics came into use after World War II. But Welborn's study was based on a review of just 183 non-institutional sterilization operations. If three deaths occurred in that small group, that would be an extremely high rate, Lombardo said. In Virginia, records indicate a death rate of about 1 for every 1,000 sterilization operations before World War II. Johanna Schoen, a professor at the University of Iowa who has been researching the North Carolina eugenics program for 12 years, said that the quality of medical care may have been below average in the sterilization program. "It is probably safe to assume that the people who were sterilized did not have the best surgery available," she said. Welborn's study said that the most frequent cost for female sterilizations in the 1930s was $28 - about $360 today. Schoen said that probably meant that inexperienced surgeons performed many operations. Lombardo, who has written extensively about eugenic sterilization, said that more information is needed to put the experimental surgery on the two women in context. "So much of what went on then and goes on now (in medicine) is a trial-and-error kind of thing. It doesn't necessarily have to be malignantly motivated," he said of experimental surgery. "It usually depends on the context of what the doctors were trying to do." Another test of intent is to look at whether there was any attempt to hide what went on, Lombardo said. Some of the deaths were obliquely mentioned in the 1938-40 biennial report of the eugenics board, but the experimental operations were not. Efforts to investigate the program - which was often marked by coercion and faulty intelligence tests - started in earnest after a series of stories in the Journal in December that exposed previously unreleased details. Easley apologized for the program as a result of the series. More than 100,000 pages of documents related to the eugenics program are stored at the state archives - many under "lock and key" because of concerns about medical privacy. The archives have made some records public, but ruled that medical reports from the sterilizations cannot be reviewed by anyone. Hooker Odom said that the Eugenics Study Committee may take a harder look at the confidentiality issue because of the deaths and the experimental operations. Lombardo said that confidentiality laws are meant to protect the patient, not to hide medical issues. If a patient's name, age, race, residence and all other "identifiers" are stripped from records, it would not breach any ethical guideline, he said. "If the information has been de-identified, I'm not sure what argument you make on privacy grounds that would prevent you from releasing it," he said. Virginia was the first state to issue an apology for a eugenics program, early last year, followed by Oregon and North Carolina in December. South Carolina followed suit last month. In other places "there have been concerns voiced about opening the state to legal liability," Lombardo said. "I know of no state that has offered compensation, or set up a commission to look into it. "I think it's extraordinary that (Easley) has taken the step he has, and is following up in good faith," Lombardo said. He cautioned that for any investigation or reparations program to work, it will have to stay focused. Some of those ordered sterilized in North Carolina wanted the sterilization operations, he said, and the focus should be on people who were sterilized against their will. "I think for practical reasons we should stay away from other kinds of damages - including deaths," Lombardo. "(Reparations) should be for people who are alive and not some of their relatives, or relatives of people who died." Easley asked the Eugenics Study Committee to investigate how the program unfolded in North Carolina, how to prevent a similar occurrence in the future and how to redress the wrongs. Financial reparations are a possibility, but some supporters question whether it's the right time to debate financial compensation given the budget crisis. The state is facing a deficit estimated to be as much as $2 billion over the next two years.
Nationwide about 65,000 sterilizations were performed as part of the eugenics movement, which sought to eradicate mental illness, genetic defects and such social ills as out-of-wedlock births. The North Carolina program was the third-largest in the country, behind California and Virginia.
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