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.
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.
This advice really ignores everything I posted above.
There is genetic testing for different medical issues that can be done and if I go to a US based medical geneticist, any genetic profile done with genetic testing through a large company will likely be added to various databases and I will have no right to delete my medical records, including whatever data the labs keep and doctor’s report.
Previously, in the USA, I was legally strong-armed to provide therapy records I was raped. (I tried to commit suicide, was involuntarily hospitalized, involuntarily medicated with anti-psychotics because they said my rape claim could be delusional, and the hospital refused to release me unless I provided records. I also administratively appealed this as a HIPAA violation and lost and ended providing records about being raped to a bunch of mean-spirited staff members who were prejudiced and offered various religious opinions to try to convert me to Catholicism because apparently I was somehow sinful or needed to be saved. I am also an atheist. Once I provided therapy records about being raped, they realized I wasn’t lying and stopped threatening to put me on even higher doses of anti-psychotics and let me out.)
It must be nice being normal and not afraid of doctors, but please read the question or don’t provide your opinion which ignores the information already provided which is I DO NOT THINK HIPAA PROVIDES SUFFICIENT PROTECTION TO MAKE ME FEEL COMFORTABLE. If I wanted the standard opinion, I would have already sought that out.
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.