genomics & society

Genotype-driven research recruitment: Explanations, experiences, ethics

Posted by Marsha Michie on January 12, 2012

Several of us at the Center for Genomics and Society have been working on a project about genotype-driven research recruitment. What’s that, you ask? Well, I have made a self-guided presentation via Prezi.com that explains it and talks about some of the issues we examined.

[SEE VIEWING INSTRUCTIONS BELOW]

Click on the right arrow (bottom of presentation) to prompt it to load – this may take a few moments. The word “More” should appear beside the right arrow. Click on “More” and then choose “Fullscreen” for best viewing. Use the right arrow to guide yourself through.

Or click this link to see the original:

http://prezi.com/kpgbnmxqhdod/genotype-driven-research-recruitment/

Advertisements

4 Responses to “Genotype-driven research recruitment: Explanations, experiences, ethics”

  1. Jean Cadigan said

    Marsha,
    Thank you for this wonderful post. You’ve taken a complex issue and made it not only understandable but also visually interesting.

  2. Martha K. said

    Thanks for the Prezi– a nice approach to making the information streamlined and accessible. Definitely a post to point people to if they need a basic understanding of the topic. We should have similar visual primers for more of our ELSI issues!

  3. Myra I. Roche said

    Thanks Marsha for introducing us to this useful visual. I agree with Martha that creating accurate and compelling visuals is sorely needed. I did wonder about one of the points made that indicated researchers should explain the genetic variation they find to participants. I would argue that most researchers, by and large, do not have the skill set to provide information that is potentially clinically applicable in the most useful (and ethical) way. It is also not clear to me the utility of reporting (notice I didn’t say “sharing”) findings (not “results”) that have not been clinically validated. Using the same words to mean research findings and clinical test results is common but adds an aura of clinical validity that is, for the most part, unwarranted.

    • Marsha Michie said

      Hi Myra,
      You make an excellent point, and the issue of sharing preliminary findings versus clinically validated results is a challenging one. The research team for this project held a 2-day workshop last year, with experts in the field and representatives from our interview participants, to discuss this issue among others. They formulated recommendations that are not yet published, but which more fully address the issue of returning “individual genetic research results” (which are not usually clinicallly utilizable) when recruiting participants for future genetic research based on those findings. The threshold for returning this kind of preliminary information–primarily in order to avoid deception as to the purpose of the study–arguably cannot be the same as the higher standards of utility and validity used for the return of individual results after a study is completed.

      The key, and this is a challenging task, is to explain this information in a way that clarifies to participants why they are being recruited while making clear that the information is preliminary, has not been fully researched yet, and is (probably) not clinically utilizable.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s