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.

  • OminousOrange@lemmy.ca
    34·
    5 months ago

    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.worldOP
      31·
      5 months ago

      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

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      Seems not real or at least not maintained well.