DNA tests and privacy

[markn_1]

I’m opening a new thread to respond to this post in another thread because this line of discussion was ruled off topic in that thread.

@Lamoral

I’m not sure what you’re implying here but I’ve never understood the people who criticize these DNA tests on the basis that “they have your DNA now” or whatever. I’ve gotten this from people when the subject of the 23andMe test comes up…“dude, how could you just give them your DNA?” OK, so “they” have my DNA, what the hell is anyone going to do with it? Why should I be concerned?

This is what Consumer Reports says about it:

@Consumer Reports

The Health Insurance Portability and Accountability Act (the privacy law known as HIPAA) protects only information handled by specific entities such as doctors, hospitals, and insurance companies. Genetic tests administered by a healthcare provider fall under this law. Those that you purchase directly (without a prescription) do not. That means that depending on the rules of a given company, your genetic information can be freely shared—with scientists, insurance companies, or, theoretically, anyone who’s interested.

The Genetic Information Nondiscrimination Act prohibits employers or health insurance companies from using a person’s genetic information to make employment or health insurance decisions. But that law does not apply to long-term-care insurance, disability insurance, or life insurance. So your genetic information—a risk of early-onset Alzheimer’s, say, or breast cancer, for example—can potentially be used against you when you’re seeking these types of insurance.

One could imagine other, perhaps far-fetched, possibilities. You want a loan from our bank? Sorry, your genetic data indicates to us that you may not live to pay it off. You want to take flying lessons? Sorry, your risk of a sudden heart attack is too high.

They go on to say that 23andMe in particular claims that they will not sell your genetic data without your consent, but not all companies make that promise.

[zimaane]

It’s note hard to think of scenarios that are worrisome - an employer might not hire you if they find out you have a tendency to substance abuse, you might not be able to rent an apartment or get insurance…

On the other hand some of the info is potentially medically useful. so it’s not an easy decision

[rat_avatar]

Genetic Information Non-discrimination Act or GINA blocks employers or insurance companies from accessing this information.

I would be far more worried about your social media habits.

[septimus]

Many people submit DNA for testing without providing name, birthdate, SSN, etc. Presumably companies buy such data as statistical ensembles without accumulating data specific to known individuals.

Or is this wrong? An address has to be submitted to obtain the cheek swab kit. A credit card number may be supplied to pay for the test. Email addresses are provided which, even if they’re in fake names, may be tied by Google or Facebook (and thus the NSA) to specific individuals. How much of this data is also sold to companies which buy the DNA data?

[Bibliothecarius]

@markn_1

One could imagine other, perhaps far-fetched, possibilities. You want a loan from our bank? Sorry, your genetic data indicates to us that you may not live to pay it off. You want to take flying lessons? Sorry, your risk of a sudden heart attack is too high.

@zimaane

It’s note hard to think of scenarios that are worrisome - an employer might not hire you if they find out you have a tendency to substance abuse, you might not be able to rent an apartment or get insurance…

This! Because once people start putting a value on DNA results, what’s to stop this from happening?

People have suggested similar outcomes for Big Data and the Internet of Things. Some health insurance companies are already offering discounted premiums to people who use Fitbits and similar technology to show they are being proactive about their health. What happens if the health insurer decides to massively increase your premium if you don’t use one? Or, on the IoT side, if your “smart” refrigerator reports back how much salad it is holding so you can get a discount on your premium. Will people whose refrigerator is full of soda and junk food pay excessive premiums or even be denied insurance altogether?

Back to the DNA, I can also see potential privacy issues down the track for transgender people. If people start using DNA as an identity marker (say, by taking biometric passports a step further or using DNA as a way to access your bank accounts to combat financial fraud), people could easily be outed against their will. (On a side note, I’ve wondered what would happen if a transgender person was suspected of a crime and the police used a DNA sample to draw a sketch of the suspect - presumably, it may be easier to get away if they are looking for the wrong gender! :p)

[Bibliothecarius]

@Bibliothecarius

People have suggested similar outcomes for Big Data and the Internet of Things. Some health insurance companies are already offering discounted premiums to people who use Fitbits and similar technology to show they are being proactive about their health. What happens if the health insurer decides to massively increase your premium if you don’t use one? Or, on the IoT side, if your “smart” refrigerator reports back how much salad it is holding so you can get a discount on your premium. Will people whose refrigerator is full of soda and junk food pay excessive premiums or even be denied insurance altogether?

On another side note (sorry! I’m really passionate about this stuff!), I can see similar things happening with the way that people talk about the future of healthcare involving wearables and even implants that basically monitor your health 24/7 and send reports to your doctor if anything seems off. Sure, it’s a great way to detect cancer early. But you can bet your health insurance company would love to get their hands on that kind of data. Had a big night out with a few too many beers and a sneaky cigarette followed by a 3am greasy kebab? Congrats! Next month’s premium just went up!

Call me paranoid but my plan is to stay as analog as possible for as long as possible. If the world ever ends up in the ways I’ve described, being tracked and monitored 24/7 like a lab rat, I’m out. I refuse to live like that. Sadly, I think that’s the direction the world is heading, sooner or later. As soon as you give someone a little power over you, they keep taking more until they got it all.

[markn_1]

@zimaane

It’s note hard to think of scenarios that are worrisome - an employer might not hire you if they find out you have a tendency to substance abuse, you might not be able to rent an apartment or get insurance…

As it says in the OP,

The Genetic Information Nondiscrimination Act prohibits employers or health insurance companies from using a person’s genetic information to make employment or health insurance decisions.

But other uses of genetic data are legal. And of course laws may change.

[Treppenwitz]

@markn_1

As it says in the OP,
But other uses of genetic data are legal. And of course laws may change.

Exactly. Fifteen years ago people were blithely signing up to social media without a thought in their heads as to what might ultimately happen to their data. Don’t think so much about here and now. Think about ten years time.

j

[Doctor_Jackson]

@rat_avatar

Genetic Information Non-discrimination Act or GINA blocks employers or insurance companies from accessing this information.

Little known fact:

The State of Virginia was going to add some stipulations to the act in the State legal code. A legislator who was against the idea began a record long filibuster to delay a vote and defeat the bill. This has gone down in history as the VA GINA monologue.

[sub]it’s a little known fact because i just made it up. Just now.[/sub]

[Quartz]

@markn_1

And of course laws may change.

And those laws are only valid in the US. There’s nothing preventing a US company contracting a foreign company not subject to those laws to vet you.

[markn_1]

Bump, with this very interesting story about how the Golden State Killer was found using publicly available DNA information: https://www.wired.com/story/the-future-of-crime-fighting-is-family-tree-forensics

TLDR: DNA from semen at a crime scene was compared to publicly available data at GEDMatch, which located 12 probable relatives of the person who left the semen. The researcher then constructed a family tree containing those 12 people, then narrowed down the possible suspects in the tree based on location. As I read it, the suspect’s DNA was not in the database; he was located based on his 12 relatives who uploaded their data.