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.
Posting in solidarity. I don’t have an answer but I share all your concerns and would love to know if there are options for this as well. Until such a time as a relatively trustworthy option exists I’ll be avoiding it the same as you.
You can go to a Medical Geneticist, and they are pretty much everywhere. Ask your GP for a referral if needed. Your insurance probably even covers it if you’re concerned about specific hereditary health issues. They’ll give you a probability report of what they think may be specific issues, but current science does not give anyone the ability to specifically say your genetic profile is guaranteed to have X problems unless it’s already appeared.
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.
HIPAA refers to a specific handling of medical information, not guidelines for privacy as you seem to think it does. If you went from one network doctor to another, your information can be pulled from that same system they all use. Nothing shady going on there.
I voted you down because HIPAA absolutely does include privacy provisions, and requires written consent for data use in the way I described above.
Guess you must have reading comprehension issues then? I clarified exactly what I meant to say. The comment I responded to seems to think there’s some lockbox around your data that says it can’t go from doctor to doctor, and then I CLEARLY explained how it works.
Downvote yourself, friend.