The Right Type: Personal Genetic Testing in the Medical School Curriculum
AAMC Reporter: February 2012
—By Gina Shaw
For $99 and a bit of spit, within six to eight weeks you could be looking at a customized analysis of your personal genetic code. Just order a “Personal Genome Service” from a company called 23andMe, swab the inside of your cheek, send it back, and wait for the results. You can find out if you have an elevated genetic risk for dozens of diseases.
In an era when this kind of information is easily available to anyone with a computer, a credit card, and an Internet connection, biochemistry professors at Stanford University School of Medicine didn’t expect much controversy in June 2009 when they proposed including personal genotyping in the curriculum. But controversy they got.
“Our jaws dropped when they announced this,” said Charles Prober, M.D., senior associate dean for medical education. “As physicians who once were medical students, we recognized that doing something like this could be a very big deal, with a lot of potential problems.”
They also recognized the unique educational value of such an approach. In an August 2011 Academic Medicine commentary, Prober and two colleagues wrote that they believed students’ understanding of genetics and molecular techniques “would be more powerful and sustained if [they] were applying their knowledge to their personal genotypes.”
Over the course of the next year, an expansive committee of faculty and students debated the ethical, financial, and legal considerations of using students’ own genotypes as part of their studies of genomics. Such a novel pedagogical approach warranted careful evaluation, so Stanford’s institutional review board (IRB) approved two studies related to the course.
Medical students are legally considered a “vulnerable population.” Would they feel forced to undergo genetic testing for a grade? Stanford worked around that by making the testing, as well as the course, elective, and blinding instructors as to each student’s decision. (Those who do not undergo personal genotyping can use an anonymous, publicly available genotype instead.)
There was also the possibility that students would discover they were at risk for certain diseases. To mitigate these concerns, the first three class sessions were dedicated to discussing the risks, benefits, uses, and limitations of personal genotyping. Students also were offered access to personal genetic counseling.
In the summer of 2010, Stanford became one of the first medical schools in the United States to include personalized genotyping as part of its curriculum. The course has now been offered three times, and interest is strong—during that first summer, some 60 students signed up. That is a gratifying number for a summer elective, said Keyan Salari, Ph.D., a graduating medical student in Stanford’s M.D./Ph.D. program who directs the eight-week course. “The students are very enthusiastic and engaged,” he added.
As Stanford was shaping its course, faculty at nearby University of California-Berkeley were devising their own approach to student genetic testing—one that didn’t fare as well.
During the summer before they enter as undergraduate freshmen, all Berkeley students are asked to read a book or common piece of media that they will discuss during the first weeks of the semester.
“We considered what reading material we’d be able to offer to this large, heterogeneous group of incoming students that would be useful and accessible,” said Mark Schlissel, M.D., Ph.D., then the dean of biological sciences at Berkeley and now the provost of Brown University.
Instead of recommending a book, genetics professor Jasper Rine, Ph.D., proposed sparking a shared conversation by inviting students to do a DNA swab and test for some common, non-disease-associated genetic polymorphisms.
“I thought it was a spectacularly interesting and creative idea,” Schlissel recalled. “Perhaps I was naïve, but the controversy that followed surprised me. We weren’t testing for diseases, and we had an elegant way to be purely anonymous by barcoding samples. It was all completely voluntary.”
But after Berkeley’s IRB approved the project, a group of faculty members took notice. Soon, so did the blogosphere and the New York Times. Schlissel and his colleagues found themselves meeting with officials at the California Department of Health, who informed them that while they would be allowed to have students do the testing, they could not give back individual results.
“We could only discuss the data in the aggregate,” Schlissel said. “While that was interesting, it’s not as personally engaging. We had hoped students would look up their own results and come to the lectures full of excitement and questions.”
…Or Not to Test
Like Stanford, Tufts University School of Medicine formed a committee and spent many months debating whether to include personal genetic material in the genetics curriculum. Initially, the committee planned to introduce a pilot program among a small group of current first-year students in January 2009. The medical school intended to work out any unexpected problems before adding personal genotyping to the core genetics course taken by all incoming medical students in the fall of 2010.
But again, controversy soon erupted, as Tufts’ IRB raised a host of questions.
“Unlike at Stanford, our genetics course is taught as the first course for incoming students,” said Diana Bianchi, M.D., the Natalie V. Zucker professor of pediatrics, obstetrics, and gynecology, and an expert in prenatal genetics. “These are brand-new medical students who are vulnerable. For some of these conditions, such as Mendelian disorders, we identify specific mutations, while others just identify relative risk, and that might be confusing to students at this stage of their education.”
Ultimately, Tufts elected not to use the students’ genomes at all, a decision Bianchi and colleagues described in a January 2011 article in Genetics in Medicine. “Instead, we teach using two anonymous genomes provided by 23andMe,” she said.
This is likely just the beginning of the discussion. Faculty from other schools, both in the United States and abroad, have inquired at both Stanford and Tufts about their approaches to personal genotyping and how they should address the issue in their own curricula.
“There’s no question that there is a tremendous need for educational content about genomics and personalized medicine,” said Bianchi. “Physicians are having patients come in with genomic reports and being asked to interpret them. There’s a huge educational gap and a need for genomic literacy.”
But given the conservatism of many medical school curriculum committees, it may take time for medical education to catch up with the hurtling train of personal genomics.