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Any experience with Gene testing? What about insurance?

Digestive Health | Last Active: Jun 9, 2022 | Replies (3)
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@johnbishop

Hi @livefully, I've participated in several gene studies and was told as part of the study no information is shared without your permission. I started another discussion on the topic back in 2017 here - Research for the Common Good: https://connect.mayoclinic.org/discussion/research-for-the-common-good/.

It's actually illegal for health insurers to use this type of information according to what I've read. More info here:
Can the results of direct-to-consumer genetic testing affect my ability to get insurance?: https://medlineplus.gov/genetics/understanding/dtcgenetictesting/dtcinsurancerisk/

Are you thinking about participating in a gene study?

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Replies to "Hi @livefully, I've participated in several gene studies and was told as part of the study..."
livefully | @livefully | Jun 9, 2022

Thanks for your reply. I really appreciate you taking the time to answer my post and share your insights. Yeah, I knew it was illegal for health insurance companies to get into your genetic test results and deny you insurance based on it. However, it is not illegal to share it with other insurance such as long term care or disability. Those type of insurance can have access to your genetic testing and can determine whether or not you get the insurance and what type of fees it will be. I read this in the document I was sent to review and sign in order to participate in the research study. In the link you shared above, the second paragraph highlights this as well. I was just wondering about peoples experience with this. Have folks who have participated in research studies for gene stuff been denied long-term care insurance or things like disability? The thing Im concerned about is the inability to possibly get long-term care insurance someday.
And yes, I was thinking about participating in a study I was invited to. The only thing that has made me pause and am like "whoa" is the other insurance clause.
Your experience or thoughts on this?

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