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This sort of data is exactly what I would not want to entrust to any organisation in the midst of all of the leaks and hacks we are seeing in the news. Let alo

This sort of data is exactly what I would not want to entrust to any organisation in the midst of all of the leaks and hacks we are seeing in the news. Let alone having them sell it legally to god knows who... I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government, and thinking to myself about the consequences of this biological data falling into the wrong hands. If there are any spies in that list and any country, say China, gets a hold of it, there is no way to update that spy's security, you can't change their fingerprints the same way I can think of a new password after a hack. I might not be worried about anyone seeing my DNA profile at the moment, but maybe I will be in the future, and once the data is out there it can't be taken back or changed on my end.

toomuchtodo 10y ago
My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.
- deleted 10y ago
  [deleted]
- Fishman343 10y ago
  I do appreciate that there is a lot of public good being done with the information, my comment came off more doom-and-gloomy than I had hoped. It just seems a bit risky to me, its the sort of thing that can't really be anonymous and that gets my hackles up so to speak.
- dekhn 10y ago
  Me too! https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C let me know if you find anything interesting. When I had it sequenced, the genetic counsellors said I had none of the common disease risk factors, which seemed a bit surprising. I have a background in biology, have done extensive work with genomic data, and weighed the future risks pretty carefully. Ultimately I didn't see any real problem with posting my raw BAM files and I assume a dedicated person could identify me if they tried.
- CaptSpify 10y ago
  And if you want it to be available, it should be. I haven't seen anyone arguing that people who consent shouldn't be able to make their info public. My concern is for people who don't want that info to be made public
dekhn 10y ago
The data has been anonymized (donor name removed), deidentified (records which could be used to derive the donor name have been removed or otherwise modified), and aggregated (grouped across multiple individuals). It's unlikely (although not impossible) to take that data and convert it to DNA profiles of individuals.
trimbo 10y ago
> I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government Actually it was 5.6 million. https://en.wikipedia.org/wiki/Office_of_Personnel_Management_data_breach#Theft_of_fingerprints https://en.wikipedia.org/wiki/Office_of_Personnel_Management...

toomuchtodo 10y ago

My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.

deleted 10y ago
[deleted]
Fishman343 10y ago
I do appreciate that there is a lot of public good being done with the information, my comment came off more doom-and-gloomy than I had hoped. It just seems a bit risky to me, its the sort of thing that can't really be anonymous and that gets my hackles up so to speak.
dekhn 10y ago
Me too! https://my.pgp-hms.org/profile/hu80855C https://my.pgp-hms.org/profile/hu80855C let me know if you find anything interesting. When I had it sequenced, the genetic counsellors said I had none of the common disease risk factors, which seemed a bit surprising. I have a background in biology, have done extensive work with genomic data, and weighed the future risks pretty carefully. Ultimately I didn't see any real problem with posting my raw BAM files and I assume a dedicated person could identify me if they tried.
CaptSpify 10y ago
And if you want it to be available, it should be. I haven't seen anyone arguing that people who consent shouldn't be able to make their info public. My concern is for people who don't want that info to be made public

dekhn 10y ago

The data has been anonymized (donor name removed), deidentified (records which could be used to derive the donor name have been removed or otherwise modified), and aggregated (grouped across multiple individuals). It's unlikely (although not impossible) to take that data and convert it to DNA profiles of individuals.

trimbo 10y ago

> I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government Actually it was 5.6 million. https://en.wikipedia.org/wiki/Office_of_Personnel_Management_data_breach#Theft_of_fingerprints https://en.wikipedia.org/wiki/Office_of_Personnel_Management...