I’ve stumbled rather late across a very promising new blog on the experience of a consumer genomics customer, Fantastic Voyage. The blog is primarily written by Grant Wood, the senior IT strategist for a clinical genetics institute in Salt Lake City; the premise of the blog is that Wood will discuss his own experience of consumer genetic testing (via a 23andMe genome scan), while receiving input from two advisors: Marc Williams, a medical geneticist, and Janet Williams, a genetic counsellor.
In the two posts so far the highlights have been the insights from Marc Williams. For instance, on his shifting attitude towards direct-to-consumer genetic testing:
When the first Direct-to-Consumer (DTC) genome tests were made
available to the public, my initial response was this is irresponsible
and certainly not ready for use. [...]
I reflected more on this I realized that my initial reaction was in
many ways a stereotypical “doctor” response. How dare a patient take
medical care into their own hands? In reality we are asking, nay
encouraging, patients to take more and more responsibility for their
own health and heath decisions. It is hypocritical to encourage
patients to take responsibility on one hand and criticize them for
doing so on the other. While DTC testing may not be a choice I would
make as a patient, I must be willing to accept that others have a
different perspective. [my emphasis]
It’s refreshing to hear from a clinician who actually values the autonomy of his patients, rather than viewing it as an irritation. (Although I must confess to some concern at the wafty “holistic” feel of the following paragraph, which discusses an approach based on “teachable moments” that is “not necessarily ‘scientific’ or ‘evidence-based'”.)
Williams’ lengthy rumination on the 23andMe legal documents is also entertaining:
I reviewed three documents from 23andMe; the privacy statement, the
consent and waiver and the terms of service. These documents were
respectively 8, 6 and 13 pages long, the last printing in 9 pt. type. I
imported the first two into Word and ran the readability statistics
package. The ease of reading was 31.6 and 34.4 (target being in the
60-70 range) and grade level was nearly 14. Medicare requires that its
patient materials have a readability grade level of 5, and most health
educators recommend nothing higher than 8th grade reading level for
patient-directed material. This raises the question of how well the
materials are understood by the reader (recognizing that in many if not
most cases, the documents aren’t even read).
If personal genomics companies want to be seen as empowering consumers they’ll need to do a better job of obtaining truly informed consent.
I’m looking forward to further installations.