Spotlight on Genetic Research

Local geneticist featured on cover of Parade magazine

By Pamela Bond

Washington, D.C. Examiner

Nov. 9, 2009

Leonardo DiCaprio. Robert DeNiro. Nicole Kidman. Eric Hoffman. One of these is not like the others.

Dr. Hoffman, director of the Center for Genetic Medicine Research at Children’s National Medical Center, joined the ranks of countless actors, musicians and other celebrities on August thirtieth, 2009, when he appeared on the cover of Parade magazine. While he is not known as a household name, Hoffman is a bit of a rock star in the field of medicine. He has published over two hundred and fifty scientific articles, some of which are among the most cited in the world. He secures about nine million dollars each year to fund his research on different diseases.

While the media has not always accurately represented complicated scientific research, Hoffman decided to put aside his reservations and agree to be in the story as a way of publicizing his work to cure a debilitating disease.

The article? “Discoveries That Can Save Your Life,” which is a good way to describe Hoffman’s work. The geneticist, along with teams of researchers all over the world, is trying to find a treatment for muscular dystrophy.

“It’s a devastating disease,” Hoffman said. “Kids are normal until about four years of age and then gradually they lose all the muscles in their body so they can’t walk anymore by eleven and can’t breathe anymore by sixteen and they just die.”

Muscular dystrophy is a genetic disease, caused by a mutated gene, so people are born with it. It causes the muscles, which include not just the skeletal muscles such as those in arms and legs used for movement but muscles like the heart as well, to weaken and waste away.

Currently, Hoffman is working on a possible treatment project in London – the world’s first clinical gene therapy trial for muscular dystrophy. So far, research shows that the gene associated with the disease can be repaired using an enzyme, but researchers still have a lot of work to do before it can be tested on humans.

The article originated because Parade has a long-standing relationship with the Muscular Dystrophy Association, which hosts the famous telethon around Labor Day. Hoffman, however, was not thrilled when he was chosen to be the face of the cause.

“One thing which I think speaks to what you are trying to get at is part of the nature of people that mainly have their pictures on the cover of magazines, like actors, like you pointed out, is that that’s a good thing, right?” Hoffman said. “In other words, if you get your picture on the cover of something that’s considered a good thing. But from the scientist’s perspective, that’s not necessarily true. In fact, I was very hesitant.”

One reason he said he was cautious was because being photographed was not part of what he expected in his job as a geneticist. Another reason was because he was afraid of “overselling” the research he was doing. Hoffman had been a part of the team that worked on the Human Genome Project, which aimed to identify what trait each human gene represented. During that time, he saw that the media misrepresented a lot of the team’s work.

“They almost thought you could just sprinkle this gene on a person’s head and they’d jump out of their wheelchair,” Hoffman said. “Twenty years later that didn’t happen. So the false expectation created false hope in so many families as a consequence of those news reports and scientists.”

Finally, he works with a team of one hundred and twenty researchers at Children’s and other medical centers in different countries, and he didn’t want to seem like he was taking full credit for all their work.

“It’s the analogy of a soloist versus a chorus,” Hoffman said. “Me, I work as part of a chorus, which when we’re all unified and we’re all doing the same thing is a tremendous thing. That’s one of the things I like about it – it’s incredibly orchestrated.”

In the end, bringing awareness to the research at the center and the potential it has to save children’s lives satisfied his doubts.

“The end result of the article was to generate interest and public awareness in muscular dystrophy and its research progress, which is tremendous,” Hoffman said. “In the last few years, we’ve been actively involved in a treatment for the kids that are just dying. So that was the focus of the article, even though it only had a few sentences on that.”

Actually seeing his face on the cover, however, was a whole different story.

“My initial reaction, now that I think about it, was wondering how many people’s cup of coffee I ruined that morning,” Hoffman said, because he does not picture himself as glamorous as most celebrities who pose for magazine covers.

Relatives who had never met Hoffman told him at a family get-together that they had placed the magazine on their mantels in hopes of meeting him.

Hoffman’s interest in genetics began in high school, when he took a course on biology and human values, which looked at the intersection of science and societal values. The ethics of that subject attracted him to the field, he said.

Hoffman studied biology and music at Gettysburg College in Pennsylvania, then earned his doctorate in genetics from Johns Hopkins University. His post-doctoral work at Harvard University consisted of experimenting on fruit flies, changing their eye color or wings. But Hoffman wanted to work with human diseases. His goal now is to “fix these kids, to dramatically change their way of life.” He still carries his passion for science and society.

“To some respect I feel that my goal now is a people scientist, someone who tries to get people from very diverse backgrounds working together for a common goal,” Hoffman said. “I think that’s great. It’s the fundamental strength of humanity to take on these large, collaborative projects.”

Although the Parade article was short, he believes it accomplished what it was meant to.

“It’s so much of a balance of hope and hurt,” Hoffman said. “I think Parade achieved that so I was quite happy.”

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