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)?