Research Ethics Blog

Asking questions about mass genetic testing isn’t so bad, is it?

There has been plenty of coverage in the news and on various blogs about the genetic testing of freshmen students at UC Berkeley. The students, as part of their admission package, are being offered an opportunity to take part in genetic testing to gather information on how their bodies metabolize alcohol, lactose and folate. Here’s a story about the study from The New York Times: College Bound, DNA Swab in Hand

Each freshman will get two bar code labels, one to put on the sample and one to keep. After the genotyping is complete, the results will be posted on a Web site using the bar code identification, so only the person who provided the DNA sample will know whose it is.

“In the decade ahead, the new genetics is going to penetrate everyday medical practice,” said Mark Schlissel, dean of biology at Berkeley. “We wanted to give students a sense of what’s coming, through genes that can provide them with useful information. I think it’s one of the best things we’ve done in years.”

But some bioethicists say the whole idea of genetic testing outside a medical setting is troubling.

“It’s a bad precedent to set up mass testing without some sort of counseling support,” said Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania. “I’d rather people get their results in a medical setting, where they can ask questions about the error rate or the chances of passing it on to their children, and not just see it posted on some Web site.”

The stories in the media have highlighted a number of objections to the idea of the study — the worry over consent, the method of recruitment (through the admissions process), the concern that participants aren’t being counselled thoroughly about the results and the the responsibility of the researchers to inform participants fully about how their genetic material will be used. All these concerns are well-founded and ones that any ethics review board would have hopefully addressed. It’s clear that Berkeley’s ethics review board approved this study and it’s reasonable to assume that those kinds of concerns would have been noted at the time of review and subsequent approval. Yet, without these kinds of details in the news stories, it’s also reasonable that ethicists and critics are voicing these concerns.

One of the lead researchers’ colleagues, however, posted a response to those who have questioned the study, in his own blog. Michael Eisen wrote a blog entry on the Science and Technology Berkeley Blog, called Geno-Luddites and Berkeley’s On the Same Page program.

There are certainly lots of complicated issues surrounding the coming age of personal genetics (see, for example, the DNA Age series published by the NY Times). But we are not going to deal with them by burying our heads in the sand and pretending that genetic testing is not going to happen. I simply cannot understand how these people – whose greatest fear seems to be exposing a genetically illiterate population to genetic information – could oppose a program whose main goal is to educate the next generation about genetics.

I think Eisen makes some good points. But I also think his pointed criticism (and even belittling) of those who are asking questions and raising concerns is misplaced. When I first read the stories about this study, I had concerns. But I didn’t think, for a moment, that the study shouldn’t be done or that we should take those concerns and apply them, in broad brushstrokes, to all kinds of genetic testing. I agree that the study is important, worthwhile. Not only are does this work aim to further knowledge about important genetic information that can easily be applied therapeutically, but it also exposes new University students (and potential future researchers!) to the realities of being involved in research. Having said all that, however, I still do wonder if students understand that, in their huge freshman application package of things that they must do, this is something that is optional. I wonder if they are getting adequate counselling about the findings and some sort of follow-up should their genetic information demonstrate anything worrying about their ability to metabolize alcohol, lactose or folate. I’m curious as to whether there are any strategies in place to address findings that might be unexpectedly problematic or pathological – which likely is a rare and unlikely possibility, but something that a research team should, at the very least, think about.

Certainly asking these kinds of questions and noting these kinds of concerns shouldn’t automatically place anyone who voices them in the category of “genetic luddite” nor is asking these kind of question equivalent to wanting a stop to all genetic research. Far from it. Even Eisen acknowledges that human genetics and genetic testing has “myriad scientific, medical, social and ethical issues that accompany it”. So a few thoughtful and well-founded questions that explore some of these issues shouldn’t be out of place.