I joined a group of Stanford medical and graduate students this summer in a class that was unprecedented – the first in the country where students could have their own genotyping done. It took the medical school a year to approve the class, as it was rife with ethical concerns. Would students feel pressured to have this testing done? How would they react to potentially scary news – for instance knowing they had a much greater risk of Alzheimer’s or Parkinson’s? Would the genotyping be useful to them in understanding the process or simply cause them harm?
These were among the questions that were hotly debated among faculty members, including ethicists and genetics specialists, who sat on a school task force. Ultimately, the program was approved with some changes, making the genotyping optional and anonymous for students.
I was curious about how this 8-week experiment would play out and ultimately wrote about the results in an article in the current issue of Stanford Medicine magazine. The graduate student who proposed the class, Keyan Salari, invited some of its major critics to come and lecture, and they did not mince words. Neurologist Michael Greicius, MD, strongly urged the students not to go for the test for the Alzheimer’s gene, as a positive result could cause them great distress. And Hank Greely, JD, a lawyer and biomedical ethicist, said the genotyping test in general could be misleading, anxiety-provoking and counter-productive.
Nonetheless, 33 of the 54 students went ahead the next day and had their genotyping done (those I talked to, however, did not opt for the Alzheimer’s test). I interviewed several students at length about their experiences. One who showed me his genotyping profile said he was very reluctant to learn his Parkinson’s results; his father had recently died of the disease, and his grief was still fresh. I later asked him more about this issue; ultimately we agreed that I could write about his feelings but that he should remain anonymous, for the information he gave me was very personal.
In general, I was impressed at how thoughtful the students were in their approach to genomics and how it was going to affect medical practice – and their own lives. I found them somewhat intimidating; these are an extraordinarily bright and gifted group. All the students I interviewed felt the class had been extremely useful and that they felt much better prepared to help others interpret the cascade of data that is sure to emerge as genotyping – and eventually whole genome sequencing – become more available and widely applied.