Forsyth in the Forefront
Medical school to probe its role in county plan for sterilization

JOURNAL REPORTER

As World War II wound down in 1944, Dr. C. Nash Herndon of the Bowman Gray School of Medicine described a eugenic sterilization program in Forsyth County using language eerily reminiscent of Nazi experimentation.

"In September 1943, a project aimed at eugenic improvement of the population of Forsyth County was begun in co-operation with Dr. J. Roy Hege, Forsyth County Health Officer. This project consists of a gradual, but systematic effort to eliminate certain genetically unfit strains from the local population. About thirty operations for sterilization have been performed," Herndon wrote in his annual report for the Department of Medical Genetics for the 1943-44 school year.

Sterilization operations not approved by the Eugenics Board of North Carolina were illegal until 1963. Though the state generally ignored sterilizations performed by private doctors on willing patients, cases of eugenic sterilization such as those described by Herndon had to be approved by the board.

Officials with the Wake Forest University School of Medicine today condemn the eugenic research.

"I think that the concepts and the practice of eugenics is wrong and unethical and would in no way be approved or condoned in modern medical times," said Dr. William B. Applegate, the dean of the medical school.

Applegate said that the medical school will set up a review committee of faculty and administrators to look into the matter.

"It is our duty to the public to be squeaky clean," he said.

Dr. William Allan was a pioneer in the field of medical genetics.
A brand new thing
When the Bowman Gray School of Medicine opened the country's first department of medical genetics in 1941, no one in the department other than its new director, Dr. William Allan, had any idea how important genetics could become.

But Allan viewed genetics as something quite different from what most people hope for today. He was an early proponent of eugenics - the movement to keep people considered unworthy from reproducing.

"It seems to me that the only way to attain the goal of positive eugenics is to actually practice negative eugenics - the prevention of the birth of the mentally and physically unfit," he wrote in a paper presented to the Eugenics Research Association in New York in 1936.

Bowman Gray is now part of Wake Forest University Baptist Medical Center, the city's largest employer and one of the most respected academic medical centers in the country. From its beginnings in genetics, it has gone on to establish a Center for Human Genomics, where cutting-edge research has been done since its creation in 2000.

But for the first few decades it was in Winston-Salem, the school's researchers enthusiastically pursued a negative form of eugenics - as evidenced by Herndon's papers found by the Winston-Salem Journal in the Dorothy Carpenter Medical Archives at the Wake Forest University School of Medicine.

Herndon's description of the Forsyth eugenics program as a "systematic effort to eliminate certain genetically unfit strains" sounds like "negative eugenics in it purest form," said Johanna Schoen, an assistant professor of women's history at the University of Iowa who researched the eugenics board while studying at the University of North Carolina at Chapel Hill.

According to Herndon's report, the Forsyth program was a cooperative effort between local elected officials and the Department of Medical Genetics at Bowman Gray.

"The expense of this project has been borne by the Forsyth County Commissioners and necessary operations have been performed at the Forsyth County Hospital. Genetic work-ups and medical affidavits have been supplied by this department," Herndon wrote.

"It (the Forsyth program) seems like a usurpation of authority that is just amazing to me," said Schoen. "Partly because if this is the kind of sterilization they wanted to do there was already a venue to do them through the eugenics board."

No mention of the Forsyth program can be found in the minutes of the Forsyth County Board of Commissioners in 1943 or 1944. County health-department records for those years have been lost or destroyed. At the request of the Journal, county officials are searching for any records pertaining to the program.

According to minutes of the Human Betterment League of North Carolina recorded in November 1949, Herndon "had himself performed six operations in the past week and told of the very advanced policy of Baptist Hospital." It is unclear whether those sterilizations were part of the Forsyth program or ordered by the state eugenics board.

Still, understanding how county officials and Bowman Gray teamed up to create a county-level eugenics program that apparently operated outside the scope of the state eugenics board is complicated. Part of the answer may lie in eugenics board records sealed by the state; parts may yet be hidden in the medical archives at Wake Forest.

"It appears to one there could have been some association between the Bowman Gray School of Medicine and the county," Applegate said. "I believe, from the documents, that our department of medical genetics was somehow involved."

Whatever the answer, any examination of the program and the medical genetics department has to begin with William Allan.

A stark beginning
Allan was one of the pioneers in genetics and he was possibly one of the most visionary members of the early community. He wrote his first study in 1916, about the genetics of migraines; by the end of his life, he had written or co-written 93 papers.

He was in private practice until 1941, when he moved from Charlotte to Winston-Salem to start the medical genetics department at Bowman Gray.

Allan was convinced that hereditary diseases could be conquered by prevention, much like some infectious diseases had been.

He could even see a day when genes could be manipulated to eliminate harmful attributes. "Numerically the bulk of our hereditary diseases … comes on too late in life to be used in any negative eugenics program as understood at present; maybe some way to modify genes might be found some day," he wrote in 1940.

Much of his work was based on field studies, including statewide surveys of people with muscular dystrophy and other crippling diseases, and surveys of 800 people in 15 counties who were blind.

"These surveys were designed to obtain data on the incidence and genetic mechanisms of the diseases in question, data that are essential for the formulation of a practical program for reducing the supply of grossly defective children in our population. The Department of Medical Genetics at the Bowman Gray School of Medicine is now engaged in a continuation of this work," according to a tribute to Allan written by Herndon in 1944.

Allan's dream was a statewide bank of genetic information. "Armies" of health workers could be mobilized to catalog genetic backgrounds of prospective parents, he said. People who wanted to get married could pick up a license to have children at the same time, if they were genetically fit.

Allan thought that at some point much of the work done by eugenicists and the state would be unnecessary.

"Will the members of families with hereditarily blind, deaf or crippled children take eugenic advice? ... After some years experience in practicing negative eugenics among the members of afflicted families, the writer knows that they are eager for reliable information about their family disability and will govern their lives accordingly," Allan wrote in the late 1930s.

Allan knew how desperate some people were to prevent hereditary diseases from being passed down. During his lifetime, he answered hundreds of letters from people with questions about genetics. Some wanted to know if they could marry first or third cousins; others wanted to know if asthma should prevent them from having a child.

The letters came from as close by as Greensboro and as far away as New Mexico, and Allan answered them all.

Usually, he told people that they should go ahead and have children.

The pioneering nature of Allan's work in genetics began to be recognized after his death. The William Allan Memorial Award for Outstanding Work in Human Genetics is still given by the American Society of Human Genetics. But Allan never got to push his ideas. He died in 1943.

He was succeeded by Herndon, a protege equally excited by the possibility of improving the human race.

A new breed
Under Herndon, the department continued to conduct surveys of blind, deaf and crippled people, looking for the links of hereditary disease.

But members of the department also continued to research - and possibly implement - eugenic ideas. Herndon was an enthusiastic supporter of eugenics. He was the president of the American Eugenics Society from 1953 to 1955 and a president of the Human Betterment League of North Carolina, a group that had helped to energize the sterilization movement after World War II.

In an updated paper called "Suggested Programs of Research in Medical Genetics," Herndon implied that eugenics could go far with the Bowman Gray Department of Medical Genetics behind it.

North Carolina was the perfect place to try out a genetics program, Herndon wrote, because so many generations of each family lived in the state, making it easier to track family trees and the diseases that flowed through them.

A more subtle reason was in play, too. Lack of protest from the community would make it easier to proceed on what could be a controversial mission, he wrote.

In the same paper, Herndon starkly laid out his case for eugenics when he wrote about how to eliminate Huntington's disease - a degenerative illness that affects a person's ability to walk, talk and think. It strikes people in their '30s and '40s and can lead to mood disorders and depression and eventually causes death.

The disease was discovered in 1872 and quickly became a target for eugenicists because it seemed easy to figure out - every child of a Huntington's patient had a 50 percent chance of contracting the disease. Doctors thought that a single gene caused the disease. Since there was no way to test for the gene in those days, the only way to know if people had the disease was to wait and see if they developed symptoms.

But many people would have already had children by that age, potentially adding another generation of people with Huntington's. That left only one eugenic option, Herndon pointed out in his report.

"Sterilization of all children of affected persons before the childbearing age would result in elimination of the defective gene .... Such a program would involve a 'wastage' of approximately 50 percent, in that only half the persons sterilized would later develop (Huntington's), but such a wastage would seem to be justified in view of the benefit to the general population that would result," he wrote.

It would have been nearly impossible to actually carry out such a plan, said Dr. Francis Walker, who is now a professor of neurology at the school of medicine.

"It's really hard to sterilize someone who has a 50 percent chance of getting the disease. That's kind of harsh," he said.

Even without the ethical considerations, the plan would not have worked, Walker said.

"You could never cut out this disease completely because there are always people whose (mutations) are sneaking up," he said. "About 5 percent of our patients we could never track it down completely in families."

Bad science?
The team's basic mistake about the origins of Huntington's casts doubt on how much its members really knew about genetics and the diseases that they were trying to eliminate.

Some of the medical knowledge about genetics was pretty good for the time, said Garland Allen, a professor of biology at Washington University in St.

Louis who has studied the history of biology and eugenics.

"In terms of the general transmission of (simple genes that carry characteristics such as eye color), transmission was quite well understood by the 1940s and '50s," Allen said. But scientists did not know how likely people were to show the characteristics of the gene if they inherited it.

"It was assumed that if a gene was transferred from parent to child, it would be automatically inherited. And that wasn't the case," he said.

There was no way that William Allan or Herndon could have known how much about genetics would be discovered during the next 60 years. But they did seem to realize that they didn't have a good understanding of some aspects of genetics.

In his papers and letters, Allan emphasized the importance of the "pedigrees," or family trees, that he and his assistants drew.

"Can you imagine a eugenic measuring rod for parents that does not start with a study of their pedigrees?" he wrote.

Today, doctors know that while heredity plays a role in some diseases, it usually does not determine whether people actually get that disease. Few would recommend that a patient forgo having children based only on family history. And new methods of genetic profiling make it much easier to find out if someone is carrying a gene for a disease.

Recessive genes caused some of the diseases that Allan and Herndon were researching, including muscular dystrophy. Herndon knew that many diseases were caused by recessive genes but did not yet know how they work.

"At the present time we do not have sufficient data concerning the frequency and distribution of such genes to recommend any program of control which would show much promise of any really significant reduction in the incidence of such diseases even after several generations," Herndon wrote.

Herndon also knew that environment plays a large role in the development of some diseases and that environmental factors help explain why some people with a family history of conditions such as diabetes never develop them. But despite his knowledge of his own shortcomings and of the unknown role that environment plays in the disease process, Herndon continued to go forward with eugenic research and genetic counseling.

It was typical of the geneticists of the time, who thought that they could apply the genetics that governed simple attributes like eye color to more complex psychological behaviors, said Garland Allen.

"The eugenicists were mostly interested in complex mental traits like feeblemindedness, alcoholism, and there was no evidence at all that those were really inherited. So there was a lot of confusion," he said.

The early genetic researchers were using faulty science, said Applegate, the dean of the medical school.

"There were certain genetic assumptions made then that we know now were wrong," he said.

A program marches on
The department's involvement in eugenics continued at least through the early 1950s. After Herndon's first mention of the Forsyth Eugenics Project in his annual report for 1943-44, department members continued their work on the project at least through 1948. Herndon's report for 1947-48 says that "steady progress" was being made and that the program was continuing and going well.

After that, the Department of Medical Genetics stopped doing its own reports until 1952, when there is no mention of the Forsyth project.

Members of the department also continued to study the genetics of blindness and certain diseases, including muscular dystrophy.

Researchers tried to use the information that they had to offer free genetic counseling. Herndon mentioned in his annual reports that the doctors counseled people who came to the hospital with questions about hereditary diseases and whether it was safe to marry relatives.

But involuntary sterilization was still an issue during the 1950s, and it involved members of other departments at Bowman Gray.

Dr. Frank Lock, a professor of obstetrics and gynecology and later head of the department, and Dr. James F. Connelly, also a doctor at Bowman Gray, co-wrote a paper for the Bulletin of the American College of Surgeons in 1953 about the indications for the sterilization of women that included a section on involuntary sterilization.

"North Carolina is considered to have one of the best eugenics laws in the nation, and the number of individuals sterilized under this law is high in comparison with the rest of the nation. (Moya) Woodside has pointed out, however, that the number of sterilizations performed under this law has probably not been high enough," the doctors wrote.

In 1950, Woodside published Sterilization in North Carolina, a book that examined the state's sterilization program. The doctors also defended the state's program. "The individual's own rights are clearly protected by due legal processes, and there is a specific section of the law which relieves the surgeon of any responsibility for performing the operation."

In the end
Late in his life, Herndon seemed to deny what had gone on in the medical-genetics department under his watch.

He spoke in 1976 with Elizabeth Allan Berger, the daughter of William Allan, as part of a series of oral history interviews set up by the Carpenter Archives. During the interview, Herndon denied that the department had ever engaged in "negative eugenics" - preventing people from having children by sterilizing them.

"From a semantic viewpoint, the word 'eugenics' acquired something of a negative connotation I think... during... um, the, well, right after the Hitler period and so on," Herndon said.

"Yes. And all the compulsory sterilization over there and that sort of thing," Berger said.

"Which was not at all what these people were interested in talking about…. We used to talk about positive eugenics," Herndon said.

But the papers that Herndon wrote and the work that Bowman Gray researchers do show that the department engaged in negative eugenics through at least the 1950s - not the least of which was the Forsyth eugenics program.

Applegate said he plans to make the results of the medical school's investigation public.

"This is a worrisome issue, and to the extent that our school was involved in it, I would like to see the details," Applegate said. "As best we can, we need to understand the past to guide the future and we need to be as transparent as possible."

Part of the present and future is work being done by the section of medical genetics, which is part of the pediatrics department at the school of medicine.

The department that Allan founded still works with children with birth defects, but in a much different way. Genetic counselors in the department talk with women who come in for prenatal testing, educating them about potential problems, and advising them about their options.

Medical geneticists in the department diagnose genetic disorders and birth defects in babies. The doctors also act as case managers for children. They see the patients every year for follow-ups to tell them about new treatments, and they coordinate care with other doctors and suggest support services, said Dr. Tamison Jewett, an associate professor in the department of pediatrics, division of medical genetics, and director of clinical services in genetics.

Like their founder, present-day members of the department want to alleviate the suffering caused by these diseases. But unlike Allan, they have the benefit of knowing that many birth defects can only be treated, not eliminated.

"If you're good at this kind of thing, which I think we are, then you can really do so much good, helping people through these times because birth defects aren't going to go away," Jewett said. "We'd like to think they are, but genes are always changing."

• Danielle Deaver can be reached at 727-7279 or at ddeaver@wsjournal.com

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