I am giving away information about myself to the ancestry dna test kit, what about privacy?
Even with using the best ancestry dna test kit, people have concerns.
Concerns about what harm can be done
The main one is health data. That a person can loose their health insurance, jobs prospects, dating prospects because it is found out that they have a health issue.
The second concern tends to be that police and other law enforcement agencies will get the data and use it against you.
There are also all kinds of theories out there about how an ancestry dna test kit company, makes money by selling your DNA and not by the small amounts of money they charge for the service.
Firstly you have to believe that data protection will not be kept to.
Also testing this stuff from your DNA is more work and companies do not do stuff for free.
If a company provides this as an added extra or part of their sales pitch, then they will do it. Otherwise we do not see why they would.
You could choose to use a company that does not do health DNA testing. However many companies actually sub contract that work, because it is such a huge cost outlay to do dna testing economically on a large scale. It needs the chips, robots and so on. As a result even if you use a company that does not offer health checks, the company they subcontract to may do it for other clients.
What the companies say
DNA test companies say that they may use or sell data, but it is anonymized. This means the buyer of it cannot tell who you are.
Some even go so far as to say the person in the lab dong your test will not know your name, just a number. Only the administration office even has that.
The companies do state though that although they will be good with your data, they cannot control what any buyer of the company would do with it, if it was sold.
They all of course talk about how secure their computer systems are and their processes.
The legal situation
In American there is the Genetic Information Non-discrimination Act 2008, which can be shorted to GINA. As a result of it
- Employers who have 15 or more employees cannot hire, fire or do promotions using DNA data as a factor.
- Insurance companies cannot charge more or refuse to give someone health insurance based on it
It is regarded though as not complete protection for people. Insurance companies can still use the data from DNA. They just cannot let it be seen that they used it for making decisions.
Law Enforcement with DNA Data
In the United Kingdom, if a person is arrested, the police have the right to take a mouth swab DNa sample. They say this is because arrested people have a higher likelihood of having committed a crime or doing so in future.
They can then use this DNA data to match people up to crime scenes and so on.
In American the ‘Golden Gate Killer’ was caught by law enforcement officials found the killer using a standard off the shelf DNA test.
However this only gave them a lead, they had to do their own separate surveillance and DNA testing to get decent proof.
Even if law enforcement agencies get the DNA data from the testing companies, it does not have ‘chain of custody’ and this makes it not reliable enough to be used legally.
Chain of custody is the paper trail that proves the time order and places that the evidence has travelled through.
It basically shows that people have been responsible for it, to show that a 3rd party has not had it for a while to meddle with it. It is the tracking of a secure system for moving the evidence around.
So for example, when an athlete is shown to have broken the rules by taking drugs, the organisations that tests the drugs has to show they have a proper ‘chain of custody’ with regards to the samples from that athlete and testing them.
Also, if a company supplying wood would like to make a claim that it is from a sustainable forest, they have to have a ‘chain of custody’ to show that the wood really did come from where they claim it came from.
Also for the law officials to go to court to get the data from the DNA testing company takes time and is expensive. They might as well do surveillance on you and get their own sample that way, like they did with the ‘Golden Gate Killer’
Will the Ancestry DNA test kit reveal health problems, even if I have not ordered that part of a kit?
Analysis done for geneology, can only uncover a very small amount of very rare genetic issues.
For example, many ancestry companies use YDNA test for seeing ancient ancestry and ethnicity. It looks at the Y chromosome DYS464. If there is a missing segment that causes male fertility, then without this a male will be infertile. This only affects 1 in every 4000 to 8000 males so is very rare.
Full MtDNA can also detect some metabolic diseases.
The companies that do not do genetic testing for health, say that even if they do test these parts of your DNA, they remove that information from the test results and will not tell the customer about it.
Also as these tests are mass produced, we believe they would not report anything that is outside the remit of the test.
As scientists discover new genetic links to various illnesses and problems, genealogy testing may cover more possible health issues.
Genetic testing , known as sequencing, was first done for medical purposes. Scientists wanted to cure diseases and understand what causes them. This was the reason behind genetic research, long before genealogy applications came along.
So this is something people always think about with genetic testing and they are right to do
The cynics view
They may say that they anonymize data, but they are still people in an organisation and people can do bad things. Data can be quickly stolen and it can happen so quickly there is nothing the company can do.
There are so many hacks of computer systems that the company thinks no one will find out about and so never admits to. Some hacks happen without the computer owner even knowing.
Basically people say the will do things but will they actually do it.
It is already known that the security services have access to cloud computer services and so no data is really private. In the UK, the National Health Service has already sold anonymised health data from their computer systems, to commercial research projects.
The really paranoid thing to say, would be that someone hacks your data to test your dna for things. Such as an insurance company, government department or something.
To be frank, so many blood tests and other samples are taken by the medical establishments, that organisations could also easily get this data from there and do whatever tests they like.
It is very easy for anyone to do the genetic testing, it is harder for them to get the sample. So it would be easier for them to get a genetic sample from something you have used or touched. Even when you drink from a cup, or eat using cutlery you leave behind genetic materials. This is easy to get by following someone for a short time
Of course there is the saying ‘Just because you are paranoid, does not mean it is not true’.
By using your phone, cloud computing and so on you are opening yourself up to things. However is it is best to take advantage to what the modern world has to offer. Of course only do the good parts of it, everything has good and bad.
Technology has led people to have more full and fruitful lives.
If you do find something out, medical professionals believe it is an essential advantage. This will mean that you can act accordingly to monitor, prevent and manage the situation. When a serious condition may be there, good doctors are now doing genetic testing to get as much information as possible.
To quote Richard Branson ‘The brave may not live forever, but the cautious do not live at all