Pediatric geneticist Gene Hoyme’s influence spans globe

S.D. native helped Sanford in pediatrics, research, Imagenetics, World Clinic

Gene Hoyme sits with his arm on a table smiling at an off-camera interviewer

Retirement looks different for everyone. Some people turn to traveling, or enjoying more time with family.

And since turning 65 a few years ago, the age when he vowed to retire at Sanford Health, Dr. Gene Hoyme has done both of those.

But retirement for the pediatric genetics specialist, who now lives in Arizona, has been just a little busier than that. Take a look at Dr. Hoyme’s other current roles:

Late last year, Dr. Hoyme and his colleagues published a paper in Pediatrics, the official journal of the American Academy of Pediatrics. This paper shows pediatricians often should be able to diagnose fetal alcohol spectrum disorders (FASD) in infancy, much earlier than previously thought.

And to top things off, Dr. Hoyme received the Rosett Award in June. The national award presented annually by the Fetal Alcohol Spectrum Disorders Study Group recognizes a researcher for his or her lifetime of work in the field of FASD.

Looking at Dr. Hoyme’s career before he “retired” confirms that he doesn’t typically let himself get bored. In fact, the pace of his resume actually seemed to pick up in the last decade of his full-time work, when he decided to make his move to Sanford Health and the USD Sanford School of Medicine.

Small-town South Dakotan at heart

Dr. Hoyme has held positions all over the country — from the Northeast to the Southwest, with occasional work in Hawaii. But his medical career actually began in high school when he started as a Red Cross volunteer and then worked as a nursing assistant in the hospital in Dell Rapids, South Dakota.

“I still consider myself a small-town South Dakotan, although I have worked in many different university environments over time,” Dr. Hoyme said.

After he earned a biology and chemistry degree at Augustana University in Sioux Falls, South Dakota, Dr. Hoyme spent 35 years away from the state.

First, he left for medical school in Chicago, where his wife’s work as a special education teacher helped pique his interest in pediatrics and children’s disabilities.

Then he did his residency in pediatrics and his fellowship in clinical genetics in San Diego. There, his mentor Ken Jones introduced him to the study of fetal alcohol syndrome, now referred to as FASD, which became his main research focus.

When Dr. Hoyme started his clinical genetics career at the University of Vermont College of Medicine in 1981, genetics was a small field. He was the only specialist in Vermont, and he traveled to clinics in Upstate New York as well.

He enjoyed his handful of years in Vermont. “I always say that Vermont is like South Dakota with mountains,” he said. “It’s that same kind of place: more cows than people, friendly folks who relate well to physicians and trust their physicians.”

On to Arizona, then Stanford

Dr. Hoyme’s next move brought him to teach pediatric genetics at the University of Arizona’s School of Medicine. While there, he helped develop a series of clinics for Native Americans. Partnering with tribes, Indian Health Service and the state’s health department, with federal funding, he had the opportunity to develop genetics and FASD diagnostic services for Native Americans.

Then one day, after about 11 years in Arizona, Dr. Hoyme got a call from an old instructor now working at Stanford University School of Medicine in California about a job opening: chief of genetics. “Well, I’m pretty happy in Arizona,” he told her, but he looked at the job anyway — and took it.

At Stanford, he ended up training 20 pediatricians in his subspecialty of clinical genetics. “They now occupy much more prestigious spots than I’ve had throughout the United States,” Dr. Hoyme said.

“I’m sort of their academic father, so that makes me proud and happy that the work people did educating me has been passed on to the next generation.”

The Stanford position also came with a nice little perk. Dr. Hoyme and his colleagues took turns commuting to work for a week each in Honolulu, because the University of Hawaii and the Kapi’olani Medical Center didn’t have a geneticist on staff then.

After a decade at Stanford, though, he got another interesting call, this time from an FASD researcher he knew in Sioux Falls.

‘Friends in California thought I was crazy’

The Sioux Falls position Dr. Hoyme learned about was twofold: serving as the chair of pediatrics for the University of South Dakota Sanford School of Medicine; and also helping develop, and then serving as chief medical officer of, the new Sanford Children’s Hospital.

“Stanford is really a wonderful university to work for,” Dr. Hoyme said. “But this opportunity in South Dakota was something I couldn’t pass up.”

Denny Sanford had given his $400 million donation to the health system earlier in 2007, allowing for construction of the children’s hospital, which opened in 2009.

“It was really the opportunity to come back and be a leader, both at Sanford Health and at the medical school, that brought me back,” Dr. Hoyme said.

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The exterior of Sanford Children's Hospital, which Dr. Hoyme was instrumental in developing.
Sanford Children's Castle of Care Hospital opened in 2009 on the Sanford USD Medical Center campus in Sioux Falls, S.D. (Photo by Sanford Health)

Reactions varied when he announced he was leaving Stanford for Sanford. (He joked about just needing a little Wite-Out for the “t” on his business cards when he moved.)

“Some of my friends in California thought I was crazy. Most of those people have been here, and after they’ve visited, they say, ‘Now we see why you came back,’” he said.

“Interestingly, my boss and the dean at Stanford thought it was a great idea. They said that if they had had the opportunity to return home to where they had grown up, they would have done the same thing.”

Dr. Hoyme helped develop a pediatric residency program so pediatricians could be trained in Sioux Falls. And he oversaw rapid growth — at least 20 new pediatricians with subspecialties were recruited for the new hospital while he served as chief medical officer.

The hospital “gave us the opportunity to make Sioux Falls into a regional referral center for children,” Dr. Hoyme said.

He also partnered with the state health department to open genetics clinics in Pierre, Rapid City and Watertown.

FASD: ‘a lifelong disability’

In 2012, Dr. Hoyme moved over to the roles of chief academic officer at Sanford Health and president of Sanford Research, an organization made up of more than 250 researchers. Areas of study at Sanford Research include pediatrics and rare diseases, along with genetics and genomics, among many others.

Dr. Hoyme’s research in FASD certainly didn’t wane when he came to Sanford Health. And he continues contributing to the knowledge of FASD today.

That knowledge has evolved quite a bit since he first started studying the preventable disability.

“Because it’s legal, I think people sometimes don’t recognize the health effects that alcohol has on the population,” Dr. Hoyme said.

Those effects magnify when a developing fetus gets exposed to alcohol. Dr. Hoyme explained that alcohol can cross the placenta easily and target the developing brain.

“If the baby is exposed to a lot of alcohol early in embryonic development, it changes the structure of the brain, but it also then changes the way the face looks,” he said.

Changes in the front part of the brain leave eyes smaller with a shorter opening, and a flatter area between the upper lip and nose. Head circumference measures smaller, too.

In addition to interfering with the brain’s physical development, alcohol also causes problems with genetic development, interfering with normal gene regulation, or the process of turning genes on and off in a cell.

This can cause a host of problems, Dr. Hoyme said, including intellectual disability, attention deficit hyperactivity disorder, poor decision-making skills, trouble making friends and difficulty with math and reading.

“It’s really a lifelong disability,” he said. “The earlier you can diagnose it, the better hope there is for early intervention, helping with performance in early life and then in later life.”

Diagnosing FASD earlier

The degree that FASD affects children can vary. Severely affected children have the recognizable facial features. Mildly affected children may not have physical signs but still can exhibit behavioral and learning problems.

“The kids who are structurally normal are the kids who are harder to diagnose, and those kids generally are not diagnosed until they are school-age,” Dr. Hoyme said.

FASD diagnostic guidelines that Dr. Hoyme and his colleagues had published in 2005, generally applied to school-age children, were updated in 2016 after they had evaluated more than 10,000 children around the world.

But in a newly published paper in the Pediatrics journal, Dr. Hoyme and his colleagues assert that most kids could be diagnosed using the previously outlined criteria by age 9 months. That early diagnosis helps the children get access to appropriate services much earlier, such as speech, language, occupational therapy and testing for hearing.

The data for the new paper came from studies of children in South Africa, where a lot of Dr. Hoyme’s research in the past two decades has focused. Up to 20% of children can be affected by FASD in South Africa, where vineyards employ several hundred thousand workers.

“I was invited to be part of an American team that was sponsored by the National Institutes of Health to go to South Africa right after apartheid ended,” Dr. Hoyme said. Before that, little scientific collaboration had existed between the two countries.

FASD studies could be conducted more quickly there because more children are affected — and more severely affected — than in the United States.

Schoolwide survey in Sioux Falls

Sanford World Clinic, an initiative of Sanford Health, aims to meet health care needs in locations around the world. In South Africa, Sanford World Clinic works to help a university with FASD clinical research. A gift from Sanford Health to the university’s medical school led to the Sanford Hoyme Fellowship in FASD. This funds someone to train for five years in diagnosing and helping prevent FASD among farm workers in South Africa.

“That was a huge thing for me, that my work there was remembered by my colleagues here in Sioux Falls,” Dr. Hoyme said. “And it’s meant a lot to the people in South Africa.”

Sioux Falls children have also been part of Dr. Hoyme’s FASD research. He estimates 1%-2% of children there have FASD.

“Sioux Falls, as a community, has been very important in moving this field forward,” Dr. Hoyme said. “Sioux Falls was actually the first community in the United States that allowed a schoolwide survey of children for how common this was.”

Dr. Hoyme and a Sanford Health colleague designed a program in which all of the elementary schools in Sioux Falls, public and private, participated.

Confidentially, and with parental consent, researchers measured first-graders’ growth, and psychological testing was done, along with an exam to spot structural features. Parents received results but not the schools.

‘Wherever he goes, he makes connections’

Amy Baete, now director of operations for the Children’s Health Initiative at Sanford Health, managed Dr. Hoyme’s in-school studies for five years, beginning in 2010. The results — which also included maternal interviews about nutrition, medication, alcohol, drugs and environmental factors — revealed to Baete that FASD exists among all populations.

“Essentially, my job was to work with the schools, the research team and the parents to make sure that the kids were taken care of throughout the study and that no child felt like they were being isolated,” Baete said.

Once they received their child’s profile back, she added, “a lot of the parents were so grateful to have a better understanding of where their child’s strengths and weaknesses were.”

Baete admired Dr. Hoyme for many reasons, including the fact that he took a chance on a nonscientist like her to lead a children’s study.

“What he had the ability to do, for those of us that didn’t have a clinical role, was … help us understand how the research that we were doing was important to the health of the community,” Baete said.

“He has this ability to build relationships. Wherever he goes, he makes connections,” she added.

“I can’t think of a better person that’s left his legacy here.”

Dr. Hoyme’s legacy is not just local. His Rosett Award recognition, given to one national FASD researcher each year, honored his cumulative work with FASD, particularly in leading efforts to establish diagnostic criteria and early diagnosis.

“This Rosett Award was important. That was for my research work,” he said. “The other award that meant a lot to me was what was called the David Smith Award.”

Dr. Hoyme received that award in 2016 from the American Academy of Pediatrics for his lifetime of work teaching and mentoring in genetics.

Sequencing of human genome boosted diagnostics

The field of genetics has evolved significantly since Dr. Hoyme began his career — when he estimates there were maybe 200 M.D. clinical geneticists in the entire United States, and he knew most of them. That number now has grown to 2,000.

When he began, patients were diagnosed with genetic diseases by physical examination and conversations with patients. He estimates that 30% of kids who came in with intellectual or physical disabilities were able to be diagnosed.

“The ground-breaking change that occurred was the sequencing of the human genome in the last decade or so. What ended up happening was, that opened up a real avalanche of testing abilities that we didn’t have before,” Dr. Hoyme said.

Now, he thinks 80% of children are able to be diagnosed. Of those who are not, the cause of the disability could be a combination of factors, including environmental.

However, Dr. Hoyme said there’s still much value in talking with and examining patients to help narrow down which genetic tests to order, by focusing on the likeliest genes involved.

“Maybe at some point it’ll be like ‘Star Trek,’ and they’ll run a tricorder over somebody, and that’ll give you an immediate genome, but we’re not there yet,” he said.

“So I teach students still to be careful diagnosticians. We owe that to our patients to talk to them.”

‘Big driver’ of Imagenetics

Dr. Hoyme served as chief of genetics and genomic medicine for Sanford Health when Sanford Imagenetics was imagined as a program “meant to bring the tools of genetics to primary care.” Denny Sanford gave $125 million to establish Imagenetics.

Dr. Cassie Hajek, physician chair for Imagenetics, lauds Dr. Hoyme’s role in turning Imagenetics from an idea into reality. “I don’t think we would have Imagenetics without him. He was a big driver of that,” she said.

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The exterior of Sanford Imagenetics, which Dr. Hoyme was instrumental in developing.
The Sanford Imagenetics building opened in 2017 in Sioux Falls, S.D. (Sanford Health photo)

Imagenetics opened in 2017, a year after Dr. Hajek, a clinical geneticist, had returned to Sanford Health after pursuing a fellowship in genetics at UCLA. She had connected with Dr. Hoyme before she left. “Dr. Hoyme kind of took me under his wing during the time that I was still here,” she said.

“It gave me someone who I could bounce ideas off, and he has been just an awesome support along the way.”

Though they came from two different backgrounds — hers in internal medicine, his in pediatrics — “we both have mutual support and respect for the others’ field,” she said. “You can’t really have one without the other.”

Both Dr. Hoyme and Dr. Hajek envision a future where genetic testing helps individuals with preventive health care. They can take steps if they know early on that they’re at a particular risk for colon cancer, for example, or heart attack.

Genetics’ role in primary care

The Sanford Chip, a genetic screening test available to Sanford Health patients, already has started to help primary care doctors identify some disease predispositions that patients can take medical action on. The test also offers information about how a person’s body might metabolize and process certain medications.

Dr. Hoyme and Dr. Hajek credit the pioneering support of Sanford Health with giving genetics a growing role in primary care. “We have a long way to go,” Dr. Hajek said, “but we’re well positioned to tackle these opportunities.”

“When genetic testing comes way down in price and is widely seen as just part of your normal health care, then the full promise of genetics will be realized,” Dr. Hoyme predicted.

Dr. Hoyme also helps direct the Sanford Children’s Genomic Medicine Consortium, a part of Imagenetics. Including Sanford Children’s (in Sioux Falls and Fargo), 10 children’s hospitals across the United States have joined forces “to bring these tools of genomic medicine into pediatric practice,” he said.

More: 10 children’s hospitals now sharing genomic footprint

So far, Sanford Health has funded two research projects among the hospitals. The first centered on rapid whole genome sequencing for ill newborns, to try to diagnose an illness early enough to apply the appropriate medical care before the newborn dies. A paper is due to publish soon about this project, Dr. Hoyme said. The second focused on developing a molecular genetics profile for children’s cancers. The consortium is currently considering new projects.

‘My biggest legacy’

Dr. Hoyme has a lot to be proud of in his career. But his pride really shines through when he talks about his family.

He and his wife, Gloria, who obtained a master’s degree in Arizona and became a specialist on autism in the classroom, have a son and two daughters, and now six grandchildren. Their son is a pediatric cardiologist in Wisconsin, and their daughters are pediatric speech therapists in Arizona.

“Everybody ended up going into pediatrics in some way. But I guess maybe they didn’t have any other role models. None of them decided to be an attorney, for example,” Dr. Hoyme said.

“My family, I think, is my biggest legacy.”

His legacy lives large at Sanford Health, too. He has accomplished much, in many areas, in just a dozen years. Yet, in a way that seems characteristic for him, he’s happy to share credit.

“I would say it’s been a combination of the talent and the people I’ve been paired with, and the fact that Sanford as a health system dreams big. So usually, if you have a really good idea, they’ll find some way of helping you bring it to reality,” Dr. Hoyme said.

“I’ve been lucky to be in the right place at the right time.”

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Posted In Children's, Faces of Sanford Health, Genetics, Internal Medicine, Research

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