I had heard that it takes a long time to come up with enough spit to fill the sample tube for the genetic test, so I waited until the weekend. I also was worried about the requirement to have not eaten, drunk, brushed teeth, yada yada for 60 minutes beforehand, so I did it first thing in the morning.
Well, perhaps the person who had trouble filling the tunbe was dehydrated. Took me almost no time at all. The biggest problem was getting it shipped off. I had skimmed the instructions a couple days ago. This morning while I was doing this, I read each step carefully as I did it. Got to the end.
Oops! Now where did I get the silly idea that I could drop it in the corner mailbox? FedEx it is, of course. I don’t have a car, and the buses barely run at all on the weekends, so this is a problem for me. I ended up phoning three different people trying to find a ride to a FedEx store so I could ship it.
The friend who gave me a ride is a lawyer. We had a very interesting conversation during the ride. She has genuine significant concerns about the idea of personalized genomics, much less participating in a research study about it, or (God forbid) blogging it!
I took notes. I promised her I wouldn’t use her name when I blogged this. 😉 The list goes like this:
– Uses of the information
– Education of scientists & clinical researchers
– Supporting policy change
I want to come back to this in more detail later, but the most significant and unifying concern she expressed seemed to be that scientists, researchers and clinicians seem to have a poverty in their training related to professional and biomedical ethics, especially in disrespecting the religious and spiritual beliefs of their patients and research participants.
Then, not a couple hours after this conversation, Charlotte Flynn pinged me on Twitter with a question:
– Do you know if anyone is building patient personal preferences (e.g. values/beliefs) into EHRs?
I sense a theme here. A very important theme.