Anyone participating in the Tapestry DNA Sequencing Research?

@johnbishop - oh ... okay. Thanks!

Is there a place where I can see my Tapestry results? I would like to opt in for some genetic testing..but need my results. Thanks for any follow up.

I think the results are stored on the Helix website according to the last email I received from my Tapestry study.

You might want to use the Contact us link on Tapestry DNA Sequencing Research Study page if you have trouble finding your results - https://www.mayo.edu/research/centers-programs/center-individualized-medicine/research/clinical-studies/tapestry-dna-sequencing-research-study/overview

In reply to jal333…I just sent my test in but had to register with helix.com. Thus, the information below from John is what you would do to communicate. They said it would take approximately 2 months to receive results.

Hello! New here and relatively new to Mayo. I just received an email inviting me to try the Tapestry study. It sounds like it could be helpful to all involved. But, I’m just wondering if anyone knows of any drawbacks of this being in your medical records in the event that you test positive. I’m retired, so it can’t impact employment. Thank you!

Hello @tinyknit, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I participated in the Mayo Clinic Tapestry Study and also did the Genes for Good study (https://genesforgood.sph.umich.edu/) a few years before I did the Tapestry Study. I really didn't see any drawbacks for myself other than the possibility of electronic health records getting hacked. Mayo Clinic is good with patient privacy and security so I felt comfortably doing the study. I also like that it is in my health record for my doctor or primary health care team to check for possible genetic risks/connections for future conditions or health problems. Here are some articles that may answer any questions you might have.

-- GENOMIC SEQUENCING: TAPESTRY STUDY: https://www.mayo.edu/research/centers-programs/center-individualized-medicine/research/clinical-studies/tapestry
-- Mayo Clinic Health TAPESTRY: Use of Genomic Sequencing in Clinical Practice: https://www.mayo.edu/research/clinical-trials/cls-20477323

If you do have any concerns, there is a contact email address on the first link above that you could use if you have any concerns. I looked at it mainly because I wanted to get more genetic information than the Genes for Good provided to me. I also liked that it was part of my Mayo medical record so that it was available if questions arised.

You asked if anyone knows of any drawbacks of the data being in your medical records in the event that you test positive. Can you expand on what you mean by you test positive (for what)?

I guess my concern was that if you test positive for a genetic variant like FH, could that cause problems later with health insurance coverage. It appears that we would be protected from that though. Just want to be sure! Thank you for your fast answer 😊

I had a similar concern but I'm pretty sure HIPAA doesn't allow that without your consent.

I think we’re good! Now to find out if I’m accepted. Thanks again!

Yes, I did the Mayo Clinic/Helix lab Tapestry research and gladly contribute to most any research. For example I contribute blood twice yearly via FEDEX to DFCI’s PCROWD study, which helps their research but provides no feedback.

From the Tapestry study I learned that I’m not positive for BRCA 1 &2 and a couple of other concerns were negative also.

Since I’ve always considered knowledge is power, I gladly contribute to most research offered. However I refused to participate in a local study where I thought my privacy might be compromised.