Research Wonder: Group Science or Puffs of Insanity?

by | Aug 31, 2015 | Opinion / Editorial, Research Wonder

Rarely a day passes without a research wonder – hearing myself or someone else saying,  “I wonder how this may impact data quality,” or, “I wonder why we keep doing it this way,” or my favorite, “I wonder if anyone else has wondered this too!

I have seen the power of the scientific method.  I have seen that ideas can grow and expand, and how they usually twist and turn.  I know that science is not linear.

So it is time for me to spin off my little wonderments to the world — like the little dirt devils that they are — to either dissipate and vanish or grow as they may.  I will post these Research Wonders here.  And the filter is OFF — no topic is off the table.  Of course, most of my Research Wonders are related to surveys, but not all.

If you have an answer to one of these wonderments, please post a comment!  Unlike the rest of the Launch Pad, comments will be turned on.  And if you have wondered the same, let me know by clicking on the “Like” heart below! If I come across an answer to a Research Wonder of my own, I will also share it here.

If you have extensive knowledge of a Research Wonder, or you would like to do an experiment, and you are interested in writing a Launch Pad post about it, let me know in the comments.  Guest posters are welcome!

That’s all for now… I wonder what my first Research Wonder will be…

Currently, the FDA only regulates true direct-to-consumer (DTC) genetic tests, which have no health care provider involved either before or after testing. Consumer-initiated, physician-mediated genetic tests are considered lab developed tests (LDTs), which currently do not require FDA oversight. 

 

Our Study Design

Our study was designed to simulate the experience of an everyday person who is considering doing a health-related genetic test. For this reason, we only reviewed website contents presented to a consumer before ordering a test. By limiting our data collection to pre-test content, instead of digging around or contacting the companies to fill in missing data points, gaps in public-facing information that consumers use to make ‘informed’ decisions were revealed.  

Also, while a genetic counselor supervised the project, a research assistant (RA) conducted most of the website investigations. The RA was familiar enough with genetics and genetic testing to understand and identify the information presented on the websites, but has not had the clinical exposure that might create bias from knowing how specific tests work “behind-the-scenes”. 

 

To Sum Up

We set out to understand the landscape of health-related consumer genomics testing from the public perspective. By limiting our research (by design) to public-facing pre-test website content, we could not complete our data collection as set out in the protocol. However, this uncovered an important observation: consumer genomics websites are highly variable in content, readability and ease of use. 

This begs the question, if we can’t find basic test information on a consumer genomics website, how does a consumer have enough information to make an informed choice about testing? 

Stay tuned for Part 2 in this series, where we will dig into our study findings and reveal our most interesting observations.  

 

 

As experts in FDA user comprehension studies for consumer genomics companies seeking 510(k) clearance, we are interested in how everyday people access and understand health content that is meant for them. If you need help optimizing your consumer-directed health communications, we’ve got the in-house expertise and experience to meet your needs. Let’s chat

About the Author

Scott D. Crawford

Scott D. Crawford is the Founder and Chief Vision Officer at SoundRocket. He is also often found practicing being a husband, father, entrepreneur, forever-learner, survey methodologist, science writer & advocate, and podcast lover. While he doesn’t believe in reincarnation, he’s certain he was a Great Dane (of the canine type) in a previous life.