15 ms·

> Wojcicki has theories Think the obvious one is that the results are shared and whether someone is a criminal or not (or will be one in the future), people ar

by jsgo 7y ago

> Wojcicki has theories Think the obvious one is that the results are shared and whether someone is a criminal or not (or will be one in the future), people are not particularly comfortable with sharing to parties they didn't initially trust it to for the purposes they trusted it for. Anecdotally, I bought a 23andme kit (just the genealogy one) but never submitted it because the labeling was to send it to the lab in the next town that manages the company I work for's drug screenings. Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that.

mc32 7y ago
Exactly. Many people naively thought that it was going to be positive. Build your family tree, get better ancestry information. Even finding family relations can be fraught with issues like illegitimate children, sperm donors who thought they’d remain anonymous, secret affairs now outed and then there is the other health data aspect...
- reaperducer 7y ago
  On CBS Sunday Morning this past weekend Steve Hartman had a piece about a 23andMe-style test let him know his parents weren't his parents and his family tree is actually a shrub that grew on the wrong side of the tracks. Being Steve, the story was told in an awww, shucks Ron Howard style with a happy ending, but I found it kind of disturbing.
- tropo 7y ago
  Some of those are evil secrets. Cheaters ought to be exposed. Living a lie is a terrible way to live.
  - irrational 7y ago
    Yeah, I don't feel at all bad about cheaters being exposed. But, children that result from that cheating... if you grew up thinking that your dad is your dad and then find out from a dna test that he isn't, that can really shake a person. And it's not from anything the child had any control over.
- e15ctr0n 7y ago
  Inheritance: A Memoir of Genealogy, Paternity, and Love by Dani Shapiro is a recent book that explores these themes. https://danishapiro.com/books/inheritance/ https://danishapiro.com/books/inheritance/
bobthepanda 7y ago
Honestly, I would also say that a partial reason why these would've dropped is that everyone who can do it has done it. You only need these kinds of results once because your DNA doesn't change. I knew people who were giving or had gotten these as gifts, but those are one-off purchases. And if you've heard of people doing it then you'll do it too but that's also a one-off. I don't think I'd personally benefit because my family came to the US relatively recently from a country that has very few records going back very far, that haven't been destroyed. So what would be the point for me?
- nradov 7y ago
  That's not quite true. Your DNA doesn't change, but 23andMe only does partial sequences on those test kits. As new techniques become available they can't necessarily retest old samples, so customers who want more complete results in the future will likely have to buy and submit new kits.
  - war1025 7y ago
    I've never seen them push that as a marketing angle. As a 23andMe customer from a couple years ago, it never even occured to me to try re-running the results.
    - ianferrel 7y ago
      I expect that this is a difficult thing to market, since most people probably don't realize that the thing they did wasn't a "complete" sequence. "Remember the thing we sold you before? Well, it wasn't that great. But now it is. Give us more money?"
      - kshacker 7y ago
        In bay area, we call it version 2.0, 3.0, 4.0, 2019, 2020. Who does not want DNA 2020? I do. [NOT in this case]
        7y ago
PaulKeeble 7y ago
When 23andme first started they were offering that a sample and your data could be destroyed whenever you liked. Then they got bought and their erasure document is a disgrace, their default position is they can't delete your genetic data and they don't say a thing about the sample at all. Those were not the terms under which it was collected. There is a reason their business is failing and its because of this enormous change to their basic policy. What they have changed to is against the law in the EU and it is definitely not GDPR compliant despite the amount they say it is in their document.
- deleted 7y ago
  [deleted]
- gmassman 7y ago
  I just sent in my spit last week and I thought they were very transparent about their data protections. They allow for you to delete your data and deny access by third parties, albeit they require 30 days to process any changes. I'm interested in learning more about my heritage, as well as contributing to genetics research. Maybe their terms have changed over time, but overall I found their explanations to be clear and thorough.
nradov 7y ago
The Genetic Information Nondiscrimination Act of 2008 (GINA) specifically prohibits health insurance companies from denying coverage or setting rates based on such tests.
- jacques_chester 7y ago
  Legislation can be changed. Including retroactively.
- markdown 7y ago
  Thank goodness for that. They definitely won't break that law. Nope. Corporations don't do that.
  - epistasis 7y ago
    When it's in their financial interest, they will avoid doing things that cost them money. Lawsuits are one such cost. Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process. If you don't know, clearly you didn't use that info for discriminatory hiring practices. Similarly, there was a very recent article about how GINA might be acting as a privacy law, since companies would prefer just not to know: https://news.bloomberglaw.com/daily-labor-report/genetic-bias-law-has-worked-perfectly-or-maybe-not-at-all https://news.bloomberglaw.com/daily-labor-report/genetic-bia... But then, there's about zero useful information in genetic information when it comes to hiring. If there were useful information, I'm sure we'd see far more violations. I'm far more concerned about access to life insurance, which is not covered by GINA. Also, it's very unlikely that a 23andMe type test will have enough clinical information that would be useful even for life insurance purposes or health insurance purposes. Clinical genetic testing is far more powerful that way.
    - reaperducer 7y ago
      Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process. And yet it happens all the time. All. The. Time. If it didn't we wouldn't spend tens of millions of taxpayer dollars on enforcement agencies and lawsuits. It doesn't matter how many laws are passed, companies are still run by people. And people do bad things, either knowingly or unknowingly or just because they can.
obilecantrem 7y ago
I also bought a 23 and me test, but I intend on submitting mine with some DNA recovered from a Mummy or something like that.
heavyset_go 7y ago
> Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that. In the US, only health insurance companies are not allowed to use genetic data to increase premiums or deny coverage, at least for now. I'm not sure what the rules are about using data derived from genetic data, however. Life insurance, disability insurance, long-term care insurance etc companies are allowed to use genetic data to determine costs for policyholders or to deny coverage[1], however. That fact alone is the reason I won't hand over my genetic data to a third party. [1] https://www.npr.org/sections/health-shots/2018/08/07/636026264/genetic-tests-can-hurt-your-chances-of-getting-some-types-of-insurance https://www.npr.org/sections/health-shots/2018/08/07/6360262...
- drcode 7y ago
  The problem is that... people/companies sometimes do things even if they are illegal.
  - heavyset_go 7y ago
    I agree, this is definitely something to worry about. The reason I brought it up wasn't to dismiss such worries, but to highlight the fact that even if someone isn't worried about the health insurance aspect today, they definitely should worry about how the collection of their genetic data could impact their ability to purchase other types of insurance.
ExactActuation 7y ago
> and certainly don't do drugs What about alcohol or caffeine?
- stronglikedan 7y ago
  Since when do they test for those in insurance related drug screenings?
- jsgo 7y ago
  Actually neither. Family history with alcohol, burned out on coffee as a kid (would drink it at my grandparents' house pretty regularly), and sodas I kicked a couple years ago because it was starting to burn when drinking some of the stronger ones (my fault. Consumed it like it was water.) But fair point, I didn't consider that when saying drugs. Meant more along the lines of drugs that work could come down on me for (marijuana and up. Personally, I think if alcohol and cigarettes are legal, so too should marijuana, but the legalization of it wouldn't change my non-use of it. Just seems a stupid prohibition to have within the context.).
rapnie 7y ago
I don't know about 23andme, but I have read Privacy Policies of similar services in the past and they are all riddled with legalese and unclear phrasing that make using the service a complete no-go for me. Also note that if the policy seems clear you have to follow and read the PP's of their partners and 3rd-parties, and then their partners, etc. IANAL and you should be before bestowing your trust in such service, unless you don't mind having your DNA profile out in the open.
Kiro 7y ago
No, that's the obvious "reason that you think should matter but doesn't".
kypro 7y ago
I wanted to buy one for a while, and my girlfriend offered to get me one for Christmas, but this is the reason I didn't.
epmaybe 7y ago
While you may or may not have trust in the US government protecting your rights, there was a law passed years ago that somewhat addresses your concern. GINA (Genetic Information Nondiscrimination Act) https://www.govinfo.gov/content/pkg/BILLS-110s358rs/pdf/BILLS-110s358rs.pdf https://www.govinfo.gov/content/pkg/BILLS-110s358rs/pdf/BILL...
pvaldes 7y ago
For people glad that "crimes will be solved", must be noted that criminals could use it in their benefit also. Just submitting a strange DNA, from a deceased people for example, to be linked with their name. That would taint the database, make they invisible to computers searching (dead people don't commit crimes) and send the hounds far away eventually. If caught you can always blame the lab for mixing your data. Looks like the modern equivalent to having a new identity after a fake new ID card.
- kimjongtrill 7y ago
  Dang good call. Gonna order up a kit and throw some random homeless persons spit/hair in it

by jsgo 7y ago

mc32 7y ago

Exactly. Many people naively thought that it was going to be positive. Build your family tree, get better ancestry information. Even finding family relations can be fraught with issues like illegitimate children, sperm donors who thought they’d remain anonymous, secret affairs now outed and then there is the other health data aspect...

reaperducer 7y ago
On CBS Sunday Morning this past weekend Steve Hartman had a piece about a 23andMe-style test let him know his parents weren't his parents and his family tree is actually a shrub that grew on the wrong side of the tracks. Being Steve, the story was told in an awww, shucks Ron Howard style with a happy ending, but I found it kind of disturbing.
tropo 7y ago
Some of those are evil secrets. Cheaters ought to be exposed. Living a lie is a terrible way to live.
- irrational 7y ago
  Yeah, I don't feel at all bad about cheaters being exposed. But, children that result from that cheating... if you grew up thinking that your dad is your dad and then find out from a dna test that he isn't, that can really shake a person. And it's not from anything the child had any control over.
e15ctr0n 7y ago
Inheritance: A Memoir of Genealogy, Paternity, and Love by Dani Shapiro is a recent book that explores these themes. https://danishapiro.com/books/inheritance/ https://danishapiro.com/books/inheritance/

bobthepanda 7y ago

Honestly, I would also say that a partial reason why these would've dropped is that everyone who can do it has done it. You only need these kinds of results once because your DNA doesn't change. I knew people who were giving or had gotten these as gifts, but those are one-off purchases. And if you've heard of people doing it then you'll do it too but that's also a one-off. I don't think I'd personally benefit because my family came to the US relatively recently from a country that has very few records going back very far, that haven't been destroyed. So what would be the point for me?

nradov 7y ago
That's not quite true. Your DNA doesn't change, but 23andMe only does partial sequences on those test kits. As new techniques become available they can't necessarily retest old samples, so customers who want more complete results in the future will likely have to buy and submit new kits.
- war1025 7y ago
  I've never seen them push that as a marketing angle. As a 23andMe customer from a couple years ago, it never even occured to me to try re-running the results.
  - ianferrel 7y ago
    I expect that this is a difficult thing to market, since most people probably don't realize that the thing they did wasn't a "complete" sequence. "Remember the thing we sold you before? Well, it wasn't that great. But now it is. Give us more money?"
    - kshacker 7y ago
      In bay area, we call it version 2.0, 3.0, 4.0, 2019, 2020. Who does not want DNA 2020? I do. [NOT in this case]
      - 7y ago

PaulKeeble 7y ago

When 23andme first started they were offering that a sample and your data could be destroyed whenever you liked. Then they got bought and their erasure document is a disgrace, their default position is they can't delete your genetic data and they don't say a thing about the sample at all. Those were not the terms under which it was collected. There is a reason their business is failing and its because of this enormous change to their basic policy. What they have changed to is against the law in the EU and it is definitely not GDPR compliant despite the amount they say it is in their document.

deleted 7y ago
[deleted]
gmassman 7y ago
I just sent in my spit last week and I thought they were very transparent about their data protections. They allow for you to delete your data and deny access by third parties, albeit they require 30 days to process any changes. I'm interested in learning more about my heritage, as well as contributing to genetics research. Maybe their terms have changed over time, but overall I found their explanations to be clear and thorough.

nradov 7y ago

The Genetic Information Nondiscrimination Act of 2008 (GINA) specifically prohibits health insurance companies from denying coverage or setting rates based on such tests.

jacques_chester 7y ago
Legislation can be changed. Including retroactively.
markdown 7y ago
Thank goodness for that. They definitely won't break that law. Nope. Corporations don't do that.
- epistasis 7y ago
  When it's in their financial interest, they will avoid doing things that cost them money. Lawsuits are one such cost. Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process. If you don't know, clearly you didn't use that info for discriminatory hiring practices. Similarly, there was a very recent article about how GINA might be acting as a privacy law, since companies would prefer just not to know: https://news.bloomberglaw.com/daily-labor-report/genetic-bias-law-has-worked-perfectly-or-maybe-not-at-all https://news.bloomberglaw.com/daily-labor-report/genetic-bia... But then, there's about zero useful information in genetic information when it comes to hiring. If there were useful information, I'm sure we'd see far more violations. I'm far more concerned about access to life insurance, which is not covered by GINA. Also, it's very unlikely that a 23andMe type test will have enough clinical information that would be useful even for life insurance purposes or health insurance purposes. Clinical genetic testing is far more powerful that way.
  - reaperducer 7y ago
    Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process. And yet it happens all the time. All. The. Time. If it didn't we wouldn't spend tens of millions of taxpayer dollars on enforcement agencies and lawsuits. It doesn't matter how many laws are passed, companies are still run by people. And people do bad things, either knowingly or unknowingly or just because they can.

obilecantrem 7y ago

I also bought a 23 and me test, but I intend on submitting mine with some DNA recovered from a Mummy or something like that.

heavyset_go 7y ago

> Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that. In the US, only health insurance companies are not allowed to use genetic data to increase premiums or deny coverage, at least for now. I'm not sure what the rules are about using data derived from genetic data, however. Life insurance, disability insurance, long-term care insurance etc companies are allowed to use genetic data to determine costs for policyholders or to deny coverage[1], however. That fact alone is the reason I won't hand over my genetic data to a third party. [1] https://www.npr.org/sections/health-shots/2018/08/07/636026264/genetic-tests-can-hurt-your-chances-of-getting-some-types-of-insurance https://www.npr.org/sections/health-shots/2018/08/07/6360262...

drcode 7y ago
The problem is that... people/companies sometimes do things even if they are illegal.
- heavyset_go 7y ago
  I agree, this is definitely something to worry about. The reason I brought it up wasn't to dismiss such worries, but to highlight the fact that even if someone isn't worried about the health insurance aspect today, they definitely should worry about how the collection of their genetic data could impact their ability to purchase other types of insurance.

ExactActuation 7y ago

> and certainly don't do drugs What about alcohol or caffeine?

stronglikedan 7y ago
Since when do they test for those in insurance related drug screenings?
jsgo 7y ago
Actually neither. Family history with alcohol, burned out on coffee as a kid (would drink it at my grandparents' house pretty regularly), and sodas I kicked a couple years ago because it was starting to burn when drinking some of the stronger ones (my fault. Consumed it like it was water.) But fair point, I didn't consider that when saying drugs. Meant more along the lines of drugs that work could come down on me for (marijuana and up. Personally, I think if alcohol and cigarettes are legal, so too should marijuana, but the legalization of it wouldn't change my non-use of it. Just seems a stupid prohibition to have within the context.).

rapnie 7y ago

I don't know about 23andme, but I have read Privacy Policies of similar services in the past and they are all riddled with legalese and unclear phrasing that make using the service a complete no-go for me. Also note that if the policy seems clear you have to follow and read the PP's of their partners and 3rd-parties, and then their partners, etc. IANAL and you should be before bestowing your trust in such service, unless you don't mind having your DNA profile out in the open.

Kiro 7y ago

No, that's the obvious "reason that you think should matter but doesn't".

kypro 7y ago

I wanted to buy one for a while, and my girlfriend offered to get me one for Christmas, but this is the reason I didn't.

epmaybe 7y ago

While you may or may not have trust in the US government protecting your rights, there was a law passed years ago that somewhat addresses your concern. GINA (Genetic Information Nondiscrimination Act) https://www.govinfo.gov/content/pkg/BILLS-110s358rs/pdf/BILLS-110s358rs.pdf https://www.govinfo.gov/content/pkg/BILLS-110s358rs/pdf/BILL...

pvaldes 7y ago

For people glad that "crimes will be solved", must be noted that criminals could use it in their benefit also. Just submitting a strange DNA, from a deceased people for example, to be linked with their name. That would taint the database, make they invisible to computers searching (dead people don't commit crimes) and send the hounds far away eventually. If caught you can always blame the lab for mixing your data. Looks like the modern equivalent to having a new identity after a fake new ID card.

kimjongtrill 7y ago
Dang good call. Gonna order up a kit and throw some random homeless persons spit/hair in it