health news: Testing

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Sunday, 28 July 2013

Greater success in personalized medicine class by students who underwent genetic testing

Main Category: Medical Students / Training
Also Included In: Genetics
Article Date: 25 Jul 2013 - 0:00 PDT Current ratings for:
Greater success in personalized medicine class by students who underwent genetic testing
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Students who had their genome tested as part of a groundbreaking medical school course on personalized medicine improved their knowledge of the class materials by an average of 31 percent compared with those who didn't undergo the testing, according to a study by researchers at the Stanford University School of Medicine.

While the sample size was small - 23 students sent their saliva to a commercial genetics testing company; eight did not - the results may encourage educators to consider this approach in the future, the authors said.

"These results indicate that learning principles of human genetics is more powerful, and learning is more sustained, when exploring your own data," said Keyan Salari, MD, PhD, a former Stanford student who initially proposed the course, called "Genomics and Personalized Medicine." Salari, who is the lead author of the study, is now a urology resident at the Massachusetts General Hospital in Boston. The study was published in PLOS ONE.

The eight-week elective course was the first in the country to give students in advanced-degree programs the option of personal genotyping as part of the curriculum. It was designed to teach them how the explosion of knowledge about genetics over the past 10 years could affect the treatment of patients. Since the course was first offered in 2010, the use of genetic testing in clinical care has grown.

The course, which is still being taught, was designed as a way to train future doctors and scientists in the skills necessary to use this new tool. The study, which was based on a pre- and post-course survey taken voluntarily by the majority of the students in the class, also showed that personal testing and the use of personal genotype data in the classroom did not appear to cause significant anxiety.

"This was a novel teaching approach," said Kelly Ormond, co-author of the study and associate professor of genetics. "There is always a lot of interest in whether personalized learning can influence education. ... What our study shows is that it might have benefits for some self-selected students, and is worthy of cautious consideration."

Initially controversial, the course was only approved after a campus task force met regularly for a year to debate the pros and cons of students undergoing genetic testing as part of a class. A number of concerns were raised, including the possible anxiety of learning they could be more susceptible to certain diseases, such as diabetes or Parkinson's. A number of safeguards were subsequently included as part of the course plan, including complete anonymity as to which students chose to undergo testing.

Salari conceived of the idea for the course in 2009 as a PhD student in genetics. He was working as a teaching assistant in the first-year human genetics course for medical students. At the time, the course curriculum consisted primarily of traditional genetics and didn't reflect the genomics revolution of the past 10 years. Salari had also recently undergone his own genetic testing, and saw the educational benefits.

"I was curious about what stories were hidden in my genome, what health risks, what responses to drugs that might be predicted," Salari said. "For instance, I learned I might have a higher risk for age-related macular degeneration. That led me to read and learn a lot more about the genetics of that disease than I probably would have otherwise."

He added: "I wanted to find a way to translate my passion for genomics to all these medical students."

Study results also showed that 83 percent of students who chose to undergo testing were pleased with their decision. Seventy percent of those who underwent the testing reported a better understanding of human genetics on the basis of having undergone testing. The post-course survey also asked students who underwent the testing whether they made any behavioral changes based on the results, such as lifestyle changes or making appointments with doctors. Some initial behavior changes were reported. Yet in a previous study involving face-to-face interviews with the same students, no behavior changes were reported six months after the end of the course.

Article adapted by Medical News Today from original press release. Click 'references' tab above for source.
Visit our medical students / training section for the latest news on this subject.

Other Stanford authors included Konrad Karczewski, a bioinformatics PhD student, and Louanne Hudgins, MD, professor of pediatrics and of medical genetics.

Stanford University Medical Center

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Sunday, 21 July 2013

Study Looks At Patients' Experience Of Direct-To-Consumer Genetic Testing

Main Category: Genetics
Also Included In: Public Health
Article Date: 19 Jul 2013 - 0:00 PDT Current ratings for:
Study Looks At Patients' Experience Of Direct-To-Consumer Genetic Testing
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Several companies sell genetic testing directly to consumers, but little research has been done on how consumers experience such tests. The tests have raised questions about the validity and accuracy of the information provided to consumers - especially without the involvement of a qualified health-care professional.

Now a study led by a researcher at Loyola University Chicago Stritch School of Medicine is providing insight into how a diverse group of primary care patients experience genetic testing.

Lead researcher Katherine Wasson, PhD, MPH, and her colleagues conducted in-depth interviews with 20 patients recruited from primary care clinics. Among the findings, published online ahead of the print edition, in the Journal of Community Genetics:

Most participants thought results were fairly easy to understand - with the help of a genetic counselor (provided by the study, not the testing company). But fewer than half said they might be able to understand results on their own. Most participants expressed no concern or hesitation about testing. But a few worried about confidentiality, especially whether the results could affect their health insurance coverage. A few also expressed fears about getting bad results. As one participant explained, "I mean, you want to know, but then you don't want to know." Participants gave several reasons why they decided to undergo testing. Most simply said they were curious. "I don't have a scientific background, so a lot of it is just fascinating to see how all of that can spin out," one participant said. Many also said test results would provide knowledge they could act on and help them prepare for the future. Said one: "If you know that there's something going on, you can go ahead and fix it now and not have to try to fix it later when it's already unfixable." A few participants wanted to help their families or the next generation, or more broadly, contribute to research and medical science. Most participants were pleased with results of the tests, mainly because they had not received bad news, despite the uncertainty of the results. "This makes me feel great," said one such participant. "I know I'll be around at least another year or two." About half the participants said they had made no changes in response to results, mainly because there was nothing on which to act. But among a few participants, receiving "low-risk" results was a motivating factor to improve their health behavior, mainly through more exercise and a better diet. One year after testing, most participants said they would take the test again and recommend it to others. "It's as if you stepped into a time capsule and you went ahead in time and you can see something," one participant said.

Patients were interviewed individually four times: during an initial session in which a saliva sample was given; four to six weeks later, when they received results; three months after receiving results; and 12 months after receiving results. All interviews were recorded and transcribed verbatim.

The patients ranged in age from 29 to 63; the average age was 49.5. Sixty percent were female, 50 percent were white and 50 percent were African-American. Thirty percent were high school graduates, 40 percent had some college, 25 percent were college graduates and 5 percent were postgraduates.

Researchers concluded: "This longitudinal, qualitative study adds more in-depth information to the emerging data on participants' decision-making process about, the experience of and reactions to direct-to-consumer testing over time . . . It is possible that our findings could be relevant to more general consumers with similar demographics, though further investigation is needed."

Article adapted by Medical News Today from original press release. Click 'references' tab above for source.
Visit our genetics section for the latest news on this subject.

Companies such as 23andMe and Navigenics test consumers’ genomes for single-gene disorders, such as cystic fibrosis; for risks of developing complex disorders involving multiple genes, such as cancer, heart disease and diabetes; for sensitivities to drugs such as Coumadin; and for traits such as baldness. Costs range from approximately $100 to $1,500. Consumers can order these tests directly and receive results without the involvement of a qualified health-care professional, such as a geneticist or genetic counselor.

Wasson, first author of the study, is an assistant professor in the Neiswanger Institute for Bioethics in Loyola’s Stritch School of Medicine. Other authors were Tonya Nashay Sanders, MA, PhD, an assistant professor at Morgan State University in Baltimore; Nancy S. Hogan, PhD, RN, a distinguished professor in Loyola’s Niehoff School of Nursing; Sara Cherny, MS, CGC, of Cadence Health; and Kathy J. Helzisouer, MD, MHS, of Mercy Medical Center in Baltimore.

Loyola University Health System