I'm curious, what is your opinion on Coriell's "paternalism"?
One thing I truly believe in is that people should have a right to their genetic information, and that most people can be trusted to understand the nuances if it's explained properly. Coriell prefers to restrict all information until they deem it actionable.
Andrew Yates
· 1 year ago
Yes, but Coriell is providing clearly defined "medical advice." That's different from general scientific information, and why I'm happy to see the two services exist side-by-side.
However, for the general public, I recommend "medical advice" over "scientific details." As of now, that service is not available, and I loathe to see non-medical advice labeled otherwise but clearly marketed as such in an effort to weasel out of the definition of "medical advice."
"Since we are not physicians, we will not offer medical advice. We will educate you about possible next steps. An example of this would be to discuss with your doctor about modifying your diet or exercise routine to try to reduce your risk of actually developing the disease. Please consult with your physician for advice on what you can do to lower your disease risk."
So what exactly *is* "medical advice"?
Andrew Yates
· 1 year ago
I can't view this because it is claiming that I need a log in. I will find out about this.
Anon
· 1 year ago
FAQ: "We will NOT report on genetic variants considered "NOT medically actionable." [...] participants will NOT be informed of these variants until a current effective treatment or intervention is available. For example, variants elevating risk for incurable diseases such as Alzheimer's disease."
I find this outrageous. Just because I can't treat it doesn't mean I can't act on it. I could choose to save more for future health care; or to take more vacation time now knowing that I might not have a healthy retirement; or to marry a woman without the gene to lessen the chances that my kids get it. etc.
Who are they to withhold *my* information? Worse of all, those who think like this criticize other services for providing this information to the public.
As more "detectable but not treatable" conditions get discovered, the problem will only get exacerbated.
Andrew Yates
· 1 year ago
I think that “actionable only” is the best option for most people, but it is best that there are genomic testing options for people who feel otherwise.
Steven Murphy MD
· 1 year ago
I would look for confirmation from 23andMe, before I believe that they ALWAYS destroyed the samples.....
All Comments
One thing I truly believe in is that people should have a right to their genetic information, and that most people can be trusted to understand the nuances if it's explained properly. Coriell prefers to restrict all information until they deem it actionable.
However, for the general public, I recommend "medical advice" over "scientific details." As of now, that service is not available, and I loathe to see non-medical advice labeled otherwise but clearly marketed as such in an effort to weasel out of the definition of "medical advice."
"Since we are not physicians, we will not offer medical advice. We will educate you about possible next steps. An example of this would be to discuss with your doctor about modifying your diet or exercise routine to try to reduce your risk of actually developing the disease. Please consult with your physician for advice on what you can do to lower your disease risk."
So what exactly *is* "medical advice"?
I find this outrageous. Just because I can't treat it doesn't mean I can't act on it. I could choose to save more for future health care; or to take more vacation time now knowing that I might not have a healthy retirement; or to marry a woman without the gene to lessen the chances that my kids get it. etc.
Who are they to withhold *my* information? Worse of all, those who think like this criticize other services for providing this information to the public.
As more "detectable but not treatable" conditions get discovered, the problem will only get exacerbated.
-Steve