TL;DR I am looking for confidential genetic testing, as I am concerned about potential misuse of my genetic information could lead to a conservatorship or loss of autonomy. I am willing to travel, and I would like all records destroyed after testing. I am also open to international options to ensure my privacy.
I'm seeking a confidential method for genetic testing, as I have concerns about my privacy. I reside in the USA and suspect I might have a mosaic genetic condition based on certain phenotype traits I observe. I'm not comfortable with my genetic information being stored in databases or shared, and I'd prefer the lab records, testing data, and results all be destroyed after completion. I'm open to traveling for this testing if necessary, especially since I do not trust US laws to provide adequate privacy protection or the right to delete medical records.
I've had experiences that have shaken my trust in institutions and governments handling sensitive information ethically, including having medical information shared without my consent by a hospital and it later being legally determined they did not violate my HIPPA rights in the process. I'm worried that my genetic information could be used against me, potentially leading to conservatorship or loss of financial autonomy. I'd like to avoid providing any legal documentation for the testing, if possible.
I'm also concerned about the security of genetic databases and the potential for breaches. Ideally, I'd like all records of the testing and medical records to be destroyed after completion to prevent unauthorized access.
Is there a way to ensure my privacy while getting the genetic testing I need? I'm open to exploring options in other countries, as long as I can ensure my privacy is protected. Please address only my privacy concerns related to genetic testing. I'm not interested in suggestions about mental health support or therapy at this time.
I do not authorize or approve of any unauthorized data scraping or AI training using this post; such actions would be unethical and without my permission.
My best recommendation would be to go to a testing lab and provide a fake name. It should work. I've never been ID'd at any doctor's office, and one time did even receive healthcare under a fake name with no trouble. Of course, that means your insurance won't cover anything, but that's the unfortunate reality of US healthcare. Also, they probably won't delete your data. HIPAA includes no right to be forgotten, and in some cases, may even mandate retention for several years.
Sorry I don't have a better solution. I think your best bet is to distance this genetic data as much as possible from your real identity.
Alternately, you could try going somewhere outside the US.
I completely agree that HIPAA is dead. One time when I went to a new doctor's office, totally unaffiliated with any doctor I'd ever seen before, the doctor instantly pulled all my medical records from several other places. They didn't even get my verbal permission; they just did it. If that's the level of security on these databases, and doctors are allowed to access them on old unsupported Windows computers, then it's almost certain that the databases have tons of undetected data breaches. They've probably been scraped completely by multiple attackers.
If they have ops dna then thats not anonymous. Though most likely they would only store positive/negative for a given condition—storing more genetic data than that just seems like a waste of storage space, especially since getting someone's dna is fairly trivial for the state for most people who will leave hair and skin cells everywhere.