When Stanford University School of Medicine became the first medical school in the nation this summer to offer a course to teach students how to interpret genetic tests, the 50 people who signed up to take it were asked to make a controversial choice: whether to study their own genotypes.
The course has proved popular. It has a waiting list for admission – unheard of for a summer class – but it took a yearlong debate before it was introduced.
Its originator, a grad student, said the course was conceived to fill a growing discipline in the field of medicine.
“Personalized medicine based on a person’s genetics is going to be a big part of the future of medicine,” said Keyan Salari, who is working toward his doctoral degrees in medicine and genetics and designed the course. “Friends of mine who are already physicians get patients coming into their offices with genetic printouts they’ve purchased, and my friends don’t know what to do.”
Medical school administrators saw merit in the course but questioned whether students should have the option of analyzing their own genotypes.
Some members of the school’s 25-member genetics task force – formed 12 months ago to figure out how to integrate genetics into the curriculum – argued that it would be ethically wrong to have students do their own genotyping as part of a formal course. How would they cope if they discovered they were susceptible to certain debilitating diseases?
“The task force really got into a philosophy-of-life debate,” said Dr. Stuart Kim, professor of developmental biology and genetics and a class instructor. “I’d want to know if I’m likely to get diabetes or cancer, because those can be prevented or treated early. But other people think the stress of knowing that would be too terrible.”
‘Risks are real’
Dr. Gilbert Chu, Stanford professor of medicine and biochemistry, said the concern shouldn’t be taken lightly. As a practicing oncologist for 30 years, he has treated many patients who had trouble dealing with bad medical news.
“The risks of genotyping are real,” Chu said. “I think students need to know they might get news that might not be easy to deal with.”
With feedback from the task force, Salari redesigned the course several times, putting in place safeguards. Personal genotyping would be optional, and instructors would not know which students chose to examine their own genetic data. Salari and Kim would make anonymous data available to all students for course exercises.
The eight-week elective began June 23 as a pilot project. The course will be evaluated before administrators decide whether to make it a permanent part of the curriculum.
A commercial saliva test that examines small portions of a person’s DNA runs about $500, but the medical school has offered to subsidize about 80 percent of the cost. The test can predict risk factors for diseases like diabetes, cancer and heart disease. It can also map a person’s ancestry, indicate receptivity to certain drugs and even predict lifespan.
Jesse Karmazin, a first-year medical student, has enrolled in the course but is uncertain whether he wants to have his own genotyping done.
“It’d be kind of cool to take a peek at your own DNA and be one of the first people in the world who gets to do it,” Karmazin said. “On the other hand, there are potentially bad things you can learn about yourself.”
In May, UC Berkeley announced that all incoming freshmen and transfer students will be asked to submit DNA samples to be tested for three genes that help regulate the ability to metabolize alcohol, lactose and folates. The university hopes the program will help put genotyping in the public eye and spur discussion among students. It was strictly voluntary, but it, too, raised concerns over privacy issues and potential misuse of the information.
Salari said Stanford’s class is very different from Berkeley’s plans.
“They’re testing thousands of young, incoming students for three pretty benign genetic factors,” he said. “We’re testing 50 medical students for 600,000 factors. … We had 12 months of deliberation with an ethics committee. We’re doing this to train physicians.”