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Disclaimer: I work for a genetics genealogy company. My comments are my own. > If, for whatever reason, you'd like to maintain your privacy, the researchers ha

Disclaimer: I work for a genetics genealogy company. My comments are my own. > If, for whatever reason, you'd like to maintain your privacy, the researchers have a couple of suggestions you could support. One is simply to have the government redefine private information to reflect this new reality, so that the studies it funds no longer link any personal information with DNA sequences. Improving government research anonymization standards is a good thing. But it will not go nearly far enough to solve privacy complaints from relatives of people who've had their DNA commercially tested for genealogy. > They also suggest that companies that offer direct-to-consumer genetics standardize on a signed, encrypted file format for information on variations. That would prevent people from taking DNA information from other sources, like DNA sequence repositories, and using it to track down your family members. I strongly believe more and better privacy regulation is necessary. I'm really curious to learn more about what sort of encrypted file format this person wants to standardize on and exactly how it's supposed to prevent people from taking DNA information from other sources.

criddell 8y ago
> I strongly believe more and better privacy regulation is necessary. What do you think the consequences will be if that doesn't happen?
- inetknght 8y ago
  Consider that there are a significant number of people who don't know they have more relatives than the ones they know and love. If the information is public, it becomes an avenue for blackmailing. Scams about relatives already happen without DNA [1]. Depending on what state in which you live your insurance coverage or cost might change too. [2] There's also significant risk that your DNA will be sequenced in one jurisdiction but, because of The Cloud, it gets analyzed and stored in another jurisdiction. For example, the EU and US have very different privacy laws. Some DNA analysis software employ stochastic algorithms. That means that the answer they provide can be different if run more than once, especially if run with different parameters (such as sample pool). [3] [4] Some customers know this and will ask for their data to be reanalyzed. Some companies make the DNA available to be downloaded by the customer. That file can then be used for your own analysis or research. It could also be uploaded to other companies for different analyses or conclusions. I don't think it's unreasonable to assume that your grandmother, who uploaded her DNA to a foreign company for a new or different analysis, has given a foreign adversary private information about you and your potential medical hazards or secret relationships. [1] https://www.khou.com/gallery/news/investigations/consumer/virtual-kidnapping-a-scary-extortion-scam/285-157917908 https://www.khou.com/gallery/news/investigations/consumer/vi... [2] https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-dna-testing-and-buying-life-insurance.html https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-... [3] http://mathgen.stats.ox.ac.uk/impute/impute_v2.html http://mathgen.stats.ox.ac.uk/impute/impute_v2.html [4] http://www.genetics.ucla.edu/software/admixture/ http://www.genetics.ucla.edu/software/admixture/

criddell 8y ago

> I strongly believe more and better privacy regulation is necessary. What do you think the consequences will be if that doesn't happen?

inetknght 8y ago
Consider that there are a significant number of people who don't know they have more relatives than the ones they know and love. If the information is public, it becomes an avenue for blackmailing. Scams about relatives already happen without DNA [1]. Depending on what state in which you live your insurance coverage or cost might change too. [2] There's also significant risk that your DNA will be sequenced in one jurisdiction but, because of The Cloud, it gets analyzed and stored in another jurisdiction. For example, the EU and US have very different privacy laws. Some DNA analysis software employ stochastic algorithms. That means that the answer they provide can be different if run more than once, especially if run with different parameters (such as sample pool). [3] [4] Some customers know this and will ask for their data to be reanalyzed. Some companies make the DNA available to be downloaded by the customer. That file can then be used for your own analysis or research. It could also be uploaded to other companies for different analyses or conclusions. I don't think it's unreasonable to assume that your grandmother, who uploaded her DNA to a foreign company for a new or different analysis, has given a foreign adversary private information about you and your potential medical hazards or secret relationships. [1] https://www.khou.com/gallery/news/investigations/consumer/virtual-kidnapping-a-scary-extortion-scam/285-157917908 https://www.khou.com/gallery/news/investigations/consumer/vi... [2] https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-dna-testing-and-buying-life-insurance.html https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-... [3] http://mathgen.stats.ox.ac.uk/impute/impute_v2.html http://mathgen.stats.ox.ac.uk/impute/impute_v2.html [4] http://www.genetics.ucla.edu/software/admixture/ http://www.genetics.ucla.edu/software/admixture/