Medical school to offer course that gives students option of studying their own genotype data

Charles Prober

It seems simple enough: Swab the inside of your cheek, mail it to a genetic testing company and a short time later you’ll get a report about your risks for certain diseases. But if you then decide to share the information with your physician in hopes of getting more guidance, you may have a problem. Few doctors have the training to correctly interpret and advise their patients about the complex web of information that personal genome testing provides.

In a step toward preparing physicians and biomedical researchers for a future where genomic testing increasingly becomes part of medical care, the Stanford University School of Medicine is offering a new course in which medical and graduate students will be given the option of studying their personal genotype data. The students will learn how to analyze, evaluate and interpret the genetic data, the limitations of the existing technologies, and the legal and ethical issues raised by personal genotyping.

School officials said they were not aware of any other medical schools offering such a course. The Stanford class is an elective, and will be offered during the summer quarter that begins June 21.

The question of whether to offer personal genotyping to students has undergone a yearlong, vigorous debate by a medical school task force, with course organizers addressing concerns that were raised by members of the group. Although not all task force members favored such a class, a majority recommended its adoption. School officials agreed that the course should be offered, given the numerous safeguards built into the curriculum by the organizers.

“Over decades, Stanford scientists have contributed substantially to our understanding of the human genome, and now the potential clinical implications of these discoveries are being investigated,” said Charles Prober, MD, the school’s senior associate dean for medical education. “It is critical for our students to develop a deep, rich understanding of the hope and the limitations of personal genomics. We are in the perfect place and at the perfect time for this type of educational approach.”

Stanford’s decision comes during an uproar over the propriety of genetic testing for college students. In May, the University of California announced plans to ask incoming first-year students to be tested for genes linked to the ability to metabolize alcohol, lactose and folic acid, with the goal of spurring discussion about the evolving world of medicine and genetics. At Stanford, the testing will assess a broader number of genes but will be limited to medical and graduate students who enroll in the course and elect to be genotyped.

The course, “Genetics 210: Genomics and Personalized Medicine,” has been developed by sixth-year MD/PhD student Keyan Salari and the course’s faculty advisor Stuart Kim, PhD, professor of developmental biology and of genetics.

Salari, who will serve as the course director, said he felt it was important to help Stanford’s medical and graduate students gain greater insight about the complexities of genetic testing and how these data will be used in the future to prevent disease and tailor specific treatments for patients — a concept known as personalized medicine.

Keyan Salari

Part of Salari’s push for the course comes from his experience as a teaching assistant for the required genetics course for Stanford’s medical students the past few years. In that course, students learn the principles of genetics as well as how genetic diseases are passed from one generation to the next. Graduate students also take a course that focuses on how to design genetics experiments. While the classes provide a basic understanding of genetics, Salari said he felt that “two floors above us, some of the most cutting-edge genetics research in the world was taking place — work that was already changing the practice of medicine. The advances in human genetics were far ahead of what was being taught in the classroom.”

What Salari proposed was a class in which students would be given the opportunity to have their personal genotyping done through commercially available tests that involve surveying the genome for specific genetic variants associated with diseases or drug responses. The students would then use the data in the class.

But the proposal to offer the genotype testing to the students drew criticism from some faculty members who were concerned that students might feel coerced into having the test — which could potentially deliver devastating information about a student’s risk for incurable diseases — in order to please the course instructors. “For this type of educational activity, you don’t have to expose students to risk,” said Gilbert Chu, MD, PhD, professor of medicine and of biochemistry, explaining the concerns raised by some of the faculty. “There are many procedures that we teach medical students, but we don’t ask them to undergo those procedures themselves. It’s not clear to me that exposing students to the risks of genotyping is necessary for their education.”

Dean Philip Pizzo, MD, put the proposal on hold so that the risks could be assessed and discussed by a task force of basic science faculty, clinical faculty, bioethicists, education officials and students. In addition to discussing possibility of coercion, the group debated whether having the school pay for the tests would give students a financial incentive to have their genotyping done. Also, some task force members wondered if the students would be adequately prepared to understand the results.

“Those of us who take care of patients understand that different people react to information differently,” said Chu, a task force member who ultimately approved of offering the course after the modifications were made. “Some people focus on things that could go wrong to the point that it might affect their lives.”

The precautionary measures implemented by the course organizers include:

• Offering the course as an elective.
• Making the genetic testing optional for those enrolled in the course.
• Ensuring that students receive adequate baseline education prior to deciding whether to have the genotyping done.
• Giving students the option of using either their own data or publicly available genome data for the classroom exercises, with instructors “blinded” as to which type of data individual students are using.
• Making counseling easily available to any student seeking advice or support.

“There’s a phenomenon of medical students thinking they have any disease that they’re studying,” said Prober. “With the genotyping, there’s a risk that the students may misinterpret the information or put too much emphasis on it, and we want to make sure that they have access to experts who can help them understand the information correctly.”

Based on the work by the task force and the course organizers over the past year, Pizzo gave approval for the class to be offered this summer.

The eight-week course will meet once a week. The first two sessions will focus on understanding the legal, ethical and social implications of genetic testing, as well as the different kinds of commercially available tests. “We want to give the students a solid foundation so that they can make an informed decision,” Prober said.

After the second session, students will decide whether to have their own personal genotyping done, and will select one of the two companies licensed to offer such testing in California — Navigenics and 23andMe. Both companies offer an educational rate for the genotyping, and the school will pay that rate for participating students. However, students will be asked to make a $99 co-pay to avoid the financial inducement of getting a “free” test. “Asking them to pay part of the cost will give the students another pause to consider, ‘Do I really want to do this?’” Prober said.

For the remaining six weeks of the course, the students will engage in lectures, journal clubs and hands-on workshops on a variety of topics, such as how personal genomics applies to clinical medicine, aging, ancestry and drug interactions. They will have laptops in the interactive sessions so that they can perform data-analysis exercises while these topics are discussed.

Salari and Kim feel that, beyond what the students learn about their own genetic data, the course will prove invaluable to them in their future roles as physicians and scientists.

“These tests are already available to the lay public,” Salari said. “Many people look to medical professionals for authoritative health advice. We need doctors and researchers who are knowledgeable about the benefits, limitations and interpretation of personal genome testing. Stanford is the right place to train the future leaders who will help usher in the era of personalized medicine.”

Although genetic counselors can help people sort through the data from personal genotyping, Salari noted in a 2009 paper he published in PLoS Medicine that there are only 3,300 board-certified genetics professionals in the United States. Given those low numbers, many people who get a genetic test are likely to turn to their physicians for advice.

Physicians might also be able to use the data to encourage patients to make healthier lifestyle choices. For instance, if test data reveal that a smoker has a greater genetic predisposition for lung cancer, a physician could make a more convincing case for the patient to give up cigarettes.

Salari, Kim and Prober expect about 50 students to sign up for the class. Students will be surveyed both before and after the course to determine its effectiveness, and the participating faculty members will also be polled. Whether the course is offered again depends on the feedback the school receives. “This is the typical process we follow when a new course is offered,” Prober said.