There is also the discussion to be had about privacy around these records which maybe I will write a post on at a later date!
So, that sentence is how I finished my last post. So that is where I will start this one. The problem with public records and privacy was briefly mentioned in the part of the documentary we watched on Aaron Swartz. The issue is that anything that is public record is technically freely available for anyone to access, but that it also contains personal data about anyone involved. It can contain every bit of personal data that someone may need to cause you all kinds of issues.
I for one know that this is an absolute fact. I used to work for a lawyer in Memphis. While I was working for them I was sent to the courthouses and county records offices many times. It is very, very easy to get copies of lawsuits that have been filed with the courts, you only need to go to the office and request a file by the case number, if you don’t have that don’t worry there is a giant book that you can look through where all cases have been registered and you can just scan it and pick a number! Once you have done this you are given a copy of the lawsuit in its entirety, without any information being withheld. So if any personal information about you is in that lawsuit then, well anyone can get it.
Another place to get this information is the county clerks office. I once had to drop off one of the lawyer’s car registration and outside the office were two huge books. One with every car registered with that office by license plate number and one by name. They weren’t even inside the office these were sitting in the hallway where anyone could walk up and get them. Not only did it have the person’s name but their current address as well.
So I find it very funny that the very people, the gov’t, that are creating privacy laws to “protect” us, are some of the worst offenders of breaches of privacy.
Another area that scares me about privacy is all of this family history DNA. There are some laws around DNA protection. One being the GINA (Genetic Information Nondiscrimination Act), which only really protects you from being discriminated by for employment and health insurance. It does not protect your privacy and as you can see in this quote it doesn’t even protect you in all areas of insurance. I find it interesting that the three areas were you are likely to need insurance because of a genetic condition, long-term, life and disability are all excluded from this law, but possibly covered by others. This kind of thing is what allows for abuses to happen more easily because it confuses the process.
Federal and military insurance. Lastly, the law does not cover long-term care insurance, life insurance, or disability insurance. Beyond GINA, additional laws and policies do offer other protections against genetic discrimination (see “Genetic Discrimination and Other Laws” page). (NHGRI, 2017)
What amazes me is that there are tons of people who are applying for these tests, including my own relatives, and they may or may not have considered that they are giving these organizations permission to test their DNA. According to two sites I looked at the DNA is still owned and controlled by you. I question this because we all know that at any point these organizations can change their user agreements and you have no way to fight that. Also, all of this information is being stored electronically and well all know that there are backups of backups all over the internet so how would you know if your data is protected. I for one use Ancestry.com and I know that it isn’t that hard to copy records from one person’s account to another person’s account. So while you may delete the data whose to say someone else doesn’t have it.
Also from their own website:
Note: If you have given your consent to participate in ongoing research efforts and you delete your results, we will stop using information about you in any future research. However, information cannot be withdrawn from studies in progress, completed studies, or published results.
If your data has gone into a study then you have lost control over it!
The second site I found, Family Tree DNA, seems to be run by a university. Which may offer a bit more protection than a private company. But again what happens if these companies are sold, go bankrupt or change their agreements. How are you protected?
Now at no point am I suggesting more ridiculous laws like GDPR, which just cause more issues than they solve. What I am suggesting is that it is time for governments to stop trying to put band-aids on problems after the fact and get some people who understand what is coming and what is possible and have them start working on solutions.
“The Genetic Information Nondiscrimination Act of 2008.” (2017, April 17)National Human Genome Research Institute (NHGRI), www.genome.gov/27568492/the-genetic-information-nondiscrimination-act-of-2008/.