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.
In the US I would have no right to delete my genetic profile there and with advances in technology my information would be likely linked to me, including databases that could be vulnerable to hacking. Using a fake name with my real genetic profile could not only get me added to a DNA database, but also a fraud database. I am concerned with losing independence and this is too risky.
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.
Yeah, it’s definitely a problem, and genetic information could end up getting linked. Even if a person thinks they might not have DNA in any existing database, whether criminal, medical, or otherwise, there’s no telling what might happen in the future. I can think of a few different ways a person might involuntarily, through no fault of theirs, get their DNA forcibly taken with no legal recourse.
Every path here will have some tradeoffs. But the odds of getting linked are probably much lower outside your home country.