Question from someone ignorant on the topic: if the US ever adopted a universal health care system in the future, would disclosures of 23andMe/Ancestry DNA to insurance companies still have negative effect? I’m assuming that under a universal system, it wouldn’t matter how severe your conditions are, as you’d be covered anyway.
There's a lot of other non-health related insurances and more that depends on an assumed average lifespan. Mortgage/Loans, employment etc. One could become an second class citizen in such a dystopian future.
I recently watched the film GATTACA. I was shocked by how appropriate it was for our time.
In the film, discrimination by genetics is, strictly speaking, against the law, but a matter of course because of how easy it is to get a sample and sequence someone. Humans are judged based on what's in their genes, not who they are.
The synthetic, designed humans are classified as "valid", while those born naturally are "invalids" or "de-gene-erates".
It would be quite easy for people of all walks of life to become second-class citizens due to information in their genomes if things do not change quickly.
At that point, from a medical perspective, I don't believe so. The other main issue would be privacy, which would not at all be affected. Under the third-party doctrine, there is no expectation of privacy when individuals share information with a third party. Therefore, that information can be demanded by police without a warrant.
Having the information collected into a central location (the insurance companies) would make it easier for a large number of these requests to be filed, rather than needing to track down individual services for each investigation.
You are putting a lot of trust in them. How did that workout with equifax? Surely such a large company with such sensitive data would take extreem measures to secure it. /s
Medical information is much better regulated than Equifax. HIPAA applies here for one example. Plus we're talking about acknowledged disclosures, rather than leaks which is apples and oranges anyway.
HIPAA applied to healthcare info, and I believe, 23andMe is consumer data and so not covered by HIPAA [0]. If they give your data to pharma or a healthcare provider it becomes covered.
Similarly the blood pressure data in my withings app or activity data in my Fitbit app is not covered by HIPAA.
"We're truly sorry, for we had no idea that we were selling your private genetic data to insurance companies, researchers, advertising firms, and the FBI. We are really sorry. We are going to investigate how this happened and make sure to fulfill our fiduciary duty to our stockholders."
But if your DNA report reveals markers for some potential health problems, and you are aware of that and do not disclose it to the insurance company when you sign up, they can cancel your policy in the future for not sharing all known health issues with them, if they find out somehow that you obtained that report and did not share it.
Since the introduction of the ACA ("Obamacare") the US no longer works the way you're claiming. You don't have to disclose preexisting conditions during sign-up, and your policy cannot be cancelled due to failure to disclose.
this is true for life insurance but not health insurance. also it seems reasonable that your insurance company shiould have access to data that defines your risk since it helps them make better statistical models to manage risk across large pools of people as well as tailor the policy costs to your individualized risk.
This is how it works in other areas, like car insurance; with an absence of data, your policy is roughly based on the average individual, but as you gain more years of driving experience (good or bad), they factor that in. Bad drivers who get in more accidents pay more because their behavior is riskier and costs more. (the big difference being, in this case, genetic risk is predetermined and not something you can easily change through behaviur modification).
I worked in insurance. A large part of how they manage costs is by policy exclusions. I believe universal coverage where they can't exclude pre-existing conditions breaks the insurance model.
It really needs to be covered by the government, like police and fire. Universal health coverage makes sense as a public good. It doesn't really make sense as an insurance product.
Great question! I am working on a method to anonymize DNA, applying cryptography at the molecular level [0].
Regarding the statement in the article about anonymization, you are correct. These data are not anonymized, your name is just removed from the file. This does not truly anonymize the data, for reasons you outlined.
Interesting quote from Linda Avey, the co-founder of 23andMe: “It’s a fallacy to think that genomic data can be fully anonymized”[1]. I disagree, and think that eventually we will be able to anonymize your genome in a test-tube, so that the data is secure before it ever touches a computer.
Because it impractical to tie the information found in the DNA back to you as an individual (e.g. name, social security number, etc). It is therefore impractical for companies to use that information to target you.
The sequenced DNA exists without any identifying information linking it to an individual. If they re-sequenced you and matched the two, they've gained nothing (since they had to re-sequence anyway), if they didn't re-sequence then they have no way of associating the two.
So now, tomorrow, or into the far future the two piece of information cannot be re-associated because there's nothing to map them. The information about the link is lost.
It is like asking "Can a lossy MP3 be restored to the lossless version if technology improves enough?" Nope. The information is simply gone. Same is true here, the associated link is just gone.
I think there are degrees to the extent of tying / linking / re-associated (you use all these). If my DNA is present in some database and at a latter point in time I am sequenced again, all "metadata" (time, geography, etc...) associated with the circumstances of the first sequence getting into that DB immediately applies. In addition all genetic relatives (known or unknown to me) whose DNA is present in the DB may be affected by the circumstances of the second sequencing.
The entire discussion is predicated on 23AndMe or Ancestry
* not pivoting their business model and selling the unanonymized data to the highest bidder.
* not being forced to reveal the unanonymized data to the authorities.
This is a common misconception, but you are incorrect. These data can be used to identify you, therefore they are not anonymous. If a name is removed from a file that contains zip-code, age and gender, that data is nevertheless sufficient to re-identify most people. Removing a name from a data-base does not necessarily anonymize that data-base.
DNA can be used to uncover your last name and ethnicity, estimate your height, hair color, eye color and more, so anonymization is not as simple as removing a name.
> DNA can be used to uncover your last name and ethnicity, estimate your height, hair color, eye color and more, so anonymization is not as simple as removing a name.
It cannot be used to uncover your last name without sampling from several generational family members (and for them to be de-anonymised). Simply having a range of heights, hair color, eye color, is not enough to identify a unique individual.
The mechanism you're claiming could exist seems to be based on already having de-anonymised sequenced DNA for most of the population. But if you had that you could infer someone's DNA profile without having to actually sequence (or more to the point, de-anonymised it) making the entire activity pointless.
Essentially your entire argument is: If we already have your sequenced DNA (or could easily infer it) then de-anonymising you is easy. Which is both true but completely pointless.
A hypothetical health care system could be designed in all sorts of ways.
While your gut feeling is likely correct, they could implement a system has reduced benefits for people deemed to costly to support. Or prioritize treatment of critical problems and not count preexisting conditions as critical.
It is much more likely that everyone would be covered in the same exact way in my opinion though.
