Andrea Downing December 11, 2013 BRCA, Dealing With Uncertainty, ePatient, Navigating Decisions

Do we really control our own decisions?

I’m thinking about the burden of navigating decisions that come with BRCA today, after reading this article from Dan Ariely. To what extent do we want decisions made for us, and to what extent do we want the power to make our own decisions when the future is uncertain?

http://embed.ted.com/talks/dan_ariely_asks_are_we_in_control_of_our_own_decisions.html

I also have found it frustrating to learn that people who end up receiving ‘Variation of Uncertain Significance’ in their own test results are not given this information. Is this really the best thing for people who are trying to make informed decisions about their health?

4Comments

Add yours

1

Teri Smieja on December 12, 2013 at 3:28 am
Reply

excerpt: “If I were their advisor I would make decisions for people. If the test reveals that you have a relatively high chance of colon cancer, but you can’t do anything about it, maybe we don’t even tell you that, but for sure not lead with this news front and center.”

Hmmmm, sorry, but no. Just no. Yes, there IS a burden of knowledge, that much I agree with. Should he have made his lab workers and family do the 23&me tests, no. That should be an individual decision.

The way I see it, we should have the right and ability to seek out affordable genetic information about our own selves. The U.S. is a free country, right? I don’t need someone/anyone telling how much I can learn about my own DNA. Absolutely not. My body, my choice.

p.s. I wish your captcha thing wasn’t a math problem. 😉

LikeLike
- 2
  
  Andrea on December 12, 2013 at 3:36 am
  Reply
  
  I felt the same way about that excerpt! It bothered me. Which is why I posted his talk – Did you see the part about organ donation? It left me scratching my head, hence the blog post.
  
  Do I really want people making decisions for me? Not for important stuff. I want the burden of choice too. But are we the norm, or the outliers?
  
  PS – You can do math!!
  
  LikeLike
3

Teri Smieja on December 12, 2013 at 3:52 am
Reply

I didn’t watch the video, but I read the article – what’s up with he would charge more, for each layer of information??

He sounds like an intelligent person, but if he were in OUR shoes, he might have different ideas. And yes, I think maybe we are the outliers….but I don’t think it’ll be long before the outliers become the norm.

LikeLike
4

Callie on December 12, 2013 at 5:57 pm
Reply

I agree with Teri that it is really unethical for this guy to foist genetic testing on his colleagues. It’s also odd that he did so, considering how paternalistic his thinking on genetic testing in (with wanting to bury data in the results, etc.). The idea of charging people more money to get to their own health informative is really outrageous. Genetic knowledge is indeed a burden, but it is the patient’s choice to take that on, not the company’s job to guard patients.

LikeLike

Share this:

Like this:

Related