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DATE: 2 MAY 2017
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Blog Archive

Thursday, April 2, 2009

Research study regarding sharing genetic information

One of the unique things about this study is that a quarter of the data will come from individuals who belong to support groups and advocate communities like ours.note: the survey is not associated with this blog

You are invited to participate in a research study which requests information in relation to sharing genetic information, from genetically flawed communities. The request for participants was originally posted on the Body Odor Support and Yahoo TMAU forum:

The purpose of the study is to collect thoughts, opinions, and beliefs from patients about who has responsibility for sharing genetic risk information within families, and when it is morally acceptable not to share information. One of the unique things about this study is that a quarter of the data will come from individuals who belong to support groups and advocate communities like ours. The researchers believe that the opinions of people like us, who actually live with these situations, are key to their research.

The data will be collected through an IRB-approved mailed survey. The survey will present 12 short stories about different ways providers and patients might react to situations that might involve sharing genetic information with family members. Each brief story is followed by 2 questions. The entire survey takes about 15 minutes to complete.

If you would like to participate: As a first step, please go to an online survey to fill out your contact information. Once you have done this, the survey will be mailed to you at the address you provided in the online survey. It is important to note that the researchers will not have access to your email address—the website is set up so that email address are not "captured." All information will remain confidential and that names will not be connected to answers. The site will provide more information on privacy but I can assure you that we can feel confident about our privacy because the professionals involved are the same honorable people we've dealt with over the years who work for our
betterment.

This is the link to the survey:

https://www.surveymonkey.com/s.aspxsm=C_2fGj736r_2fLAHxJnp1YMBRQ_3d_3d

Thanks very much for your participation; we have to stand up and be counted every chance we get.

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