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Seeking Confidential Genetic Testing: Privacy-Focused Options (lemmy.world)
submitted 1 month ago* (last edited 1 month ago) by moldonbread@lemmy.world to c/privacy@lemmy.ml
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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.

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[–] CarbonatedPastaSauce@lemmy.world 24 points 1 month ago

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.

[–] Limonene@lemmy.world 9 points 1 month ago (4 children)

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.

[–] just_another_person@lemmy.world 2 points 1 month ago (1 children)

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.

[–] Limonene@lemmy.world 1 points 1 month ago (2 children)

I voted you down because HIPAA absolutely does include privacy provisions, and requires written consent for data use in the way I described above.

[–] moldonbread@lemmy.world -1 points 1 month ago* (last edited 1 month ago)

I have had history of medication shared with a centralized medication database for my state without consent.

Insurance companies also have medical data-brokers that they consult with when determining things like whether to accept people into life insurance policies or for determining certain premiums. How they get this information is not public, and they are not supposed to share it with commercial data brokers, but I never consented to be in that sort of database and likely am.

HIPAA has not provided me with the protection I want.

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.

[–] just_another_person@lemmy.world -1 points 1 month ago

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.

[–] communism@lemmy.ml 2 points 1 month ago

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.

[–] Etterra@lemmy.world 1 points 1 month ago

Well I mean your insurance won't cover the cost of any DNA test that's being done for heritage identification.

[–] moldonbread@lemmy.world 0 points 1 month ago* (last edited 1 month ago) (1 children)

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.

[–] Limonene@lemmy.world 2 points 1 month ago

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.

[–] OminousOrange@lemmy.ca -1 points 1 month ago* (last edited 1 month ago) (1 children)

Intriguing question, I was curious if there were actually options, so asked Perplexity (ai search that provides sources, see link at bottom). Unfortunately, nothing terribly definitive other than Italy, possibly.

While truly anonymous genetic testing is challenging, there are some options outside the US that aim to provide more privacy-focused services:

  • In Canada, the Genetic Non-Discrimination Act prohibits anyone from collecting, using, or disclosing genetic test results without written consent. This gives Canadians more control over their genetic information
  • Some European companies offer more privacy-oriented testing options. For example, DANTE Labs in Italy emphasizes data protection and allows customers to delete their data at any time
  • In the UK, Genomics England runs the 100,000 Genomes Project with strict privacy controls. While not a consumer service, it demonstrates stronger privacy practices.
  • Australian company myDNA focuses on pharmacogenomics testing with an emphasis on data privacy and security.
  • Swiss company Gene By Gene offers DNA testing with data storage in Switzerland, known for strong privacy laws. However, it's important to note that no genetic test can be truly anonymous, as DNA is inherently identifiable. To maximize privacy:
  • Use a pseudonym and temporary email when ordering
  • Pay with a prepaid card
  • Avoid linking results to other accounts or sharing on social media
  • Carefully read privacy policies and opt out of research/data sharing where possible

Ultimately, genetic privacy requires careful consideration of the risks and benefits, regardless of the testing company's location.

Source

[–] moldonbread@lemmy.world 2 points 1 month ago* (last edited 1 month ago) (1 children)

DANTE Labs in Italy

This seems like an unusual site.

Under https://dantegenomics.com/solutions/diagnostics/, it shows:

Services Digital Marketing Get their product, site, or brand in front of as many of the right people as possible

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NeatBuds

Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Roogitec

Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Glang Smartwatch

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Seems not real or at least not maintained well.

[–] OminousOrange@lemmy.ca 1 points 1 month ago

Yeah and it's not clear where Perplexity pulled that part from.

[–] chemicalwonka@discuss.tchncs.de -3 points 1 month ago

You won't find. Next

[–] just_another_person@lemmy.world -4 points 1 month ago (1 children)

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.

[–] moldonbread@lemmy.world 8 points 1 month ago* (last edited 1 month ago)

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.