The Sky is Falling, Chapter 38
I am reading the coverage of the Walgreens genetic testing story and scratching my head, wondering where the freak-out comes from. “OMG, it’s IN THE DRUGSTORE.”
Yes, people will have access to their genetic information without help from a man in a white coat (assuming, of course, that they don’t want that help). But the fact of the matter is, except in New York, they already have this access: they can order a spit kit from any of dozens of companies and send it along with their credit card number to a lab to be analyzed. The only substantive difference in this case is that instead of going online, they go to the drugstore and possibly burn a few calories in the process. Customers still have to pay for the analysis and the kits must still travel through the mail. The analysis is still accessed by customers on the web. So, when Pathway Genomics says it is “revolutionizing the way people access information about their genetics,” I say, “Um, not really.”
My hope is that this is not taking place in a vacuum. I think genetics education is extremely important and I hope the folks at Pathway Genomics are providing their customers with answers to their questions, access to genetic counselors and that they are specifying exactly what it is customers are and are not getting and what it does and does not mean. But I see the panicked response to this from doctors and academics as elitist: it assumes that the ordinary person is stupid and/or not entitled to his or her genetic information without a third-party “expert.” Let’s be real: that ship sailed in 2007.
For the record, I have no conflict of interest, financial or otherwise, and have never spoken to anyone at Pathway Genomics.
I work as an Assistant Professor in the Duke University Institute for Genome Sciences & Policy (although this site and its content are my own).
In 2007 I became the fourth subject in Harvard geneticist George Church's Personal Genome Project. As the PGP moves forward, I am chronicling the dawn of personal genomics, that is, people obtaining their genomic information for whatever reason(s) and figuring out what to do with it. I am interested in the relevant technologies and especially the attendant privacy and other ethical/legal/social issues.
This blog may also discuss some of my non-genome interests or, to paraphrase Dwight Yoakam, "Guitars, Cadillacs, hillbilly music, etc etc."
The header image comes from the Liz Lerman Dance Exchange's multimedia performance piece, "Ferocious Beauty: Genome."