Any experience with gene studies? Is it true that if you are invited to participate in one, you can potentially be denied insurance (like disability, long term care, etc) later?
Interested in more discussions like this? Go to the Digestive Health group.
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?
Jump to this post
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?
I purchased long term care insurance when I retired in 2020 for the second time. They really didn't ask me any health related questions when I bought the policy. Of course I have to renew it yearly and things could change if I let it lapse. I don't know what your situation is but you might want to do some inquiries on a long term care policy to see what their policies are…never hurts to ask 🙂.
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In