Barriers to access to your own genetic info is a big issue right now, and likely to get bigger.
From Genomeweb’s Pharmacogenomics Reporter: Illumina’s New DTC Sequencing Service Addresses Ethical Quandary by Requiring Prescription
In launching its consumer whole genome sequencing service this week, Illumina will involve the physician much more directly in educating and advising its customers than other direct-to-consumer genomic firms currently do.
Debuting the service here at the Consumer Genetics conference, Illumina said that it will charge $48,000 to analyze patients’ DNA by whole-genome sequencing. But unlike DTC genomics firms, which allow customers to order gene scans over the Internet and receive sample collection kits in the mail, Illumina’s service will require a prescription from their doctor or from a physician in Illumina’s Personal Genome Network before obtaining their genomic-risk data….
Some will wonder: Why make it harder for people to buy your product? Illumina is really just trying to stay ahead of the regulatory curve, here. Lots of people are worried — rightly or wrongly — that consumers are likely to misinterpret genetic information, and maybe to make foolish choices based on what they fail to understand.. People like Ron Bailey like to argue that people just don’t need to be protected from that info. How many documented cases are there of people be hurt by genetic info? Any?
Food for thought: should we think of this in terms of barriers to individuals gaining information, or in terms of limits on a commercial transaction under conditions of information asymmetry? Does the difference in framing make a difference? Or is that a false dichotomy in the first place?