23andMe Informed Me My Husband and I Are Related(thecut.com) |
23andMe Informed Me My Husband and I Are Related(thecut.com) |
To me this is all an elaborate scam. Why on earth would you pay them to give them your data?! At least with Google et al. we know that if you are not paying for the product, you are the product. With this company you end up $100 (or whatever) short and you surrender your data for it to be sold to advertisers, insurance companies and whatnot. And not just stupid things like your Amazon shopping history or your latest Tinder conversations (which are in themselves pretty damn intimate if you ask me) but the most intimate thing of all. I actually disagree with behavioral genetics/sociobiology fundamentalists who think there's little more to the self than one's DNA, but just because one cannot make much out of it doesn't mean it can't be misused. If Gattaca implications sound scary, imagine what would happen if the decision makers had no idea what they were doing in the first place.
Because that's where we are at this point: just because X variant is associated with Y% more incidence of whatever disease does not mean extra care should be taken regarding risk factors, insurance policies, etc. The correlations are interesting when combined with other data but most of the time we have no idea what's going on and what it is that makes variant X cause disease Y, if it does at all. Doesn't mean it won't be misused.
Please people, don't pay to get your data swindled out of you. Stop with this weird fascination with your DNA, and stop trying to look for an answer when are barely asking the questions.
Not so much for the Ancestry part, which was also interesting and explained my above-average cold tolerance, but for the health stuff.
Granted, being from Europe they don't directly offer health services, but you can get the raw data and upload it to various sites for interpretation -- ranging from really accessible to follow-the-rabbit-hole style.
I've accepted from the start that everything is uncertain, or just a possibility, but it was still very useful, because I knew what to look for and thus able to validate easily if true or not.
Some things that were in the reports I already knew, some I suspected, some I had no idea and would have never guessed -- this last group had the most impact.
Some examples: allergies, motion sickness, needing above average amounts of vitamin C.
All very easy to test, but with an amazing quality of life improvement gained as a result of just changing some simple things.
So yes, a US company has my personal DNA data, maybe they will take care of my privacy, maybe not, but the quality of life gains were worth it, for me.
What other alternative would people like me have, from countries where there is no access to good doctors, of finding stuff like that, had there not been 23andme? Especially since I didn't even know what I was looking for.
I took parent's post less as a blanket warning against doing DNA tests, and more of a caution to consider the implications.
I think there is value in services like 23andme, and even if there are risks that the information will be misused, the risks are worth it. I don't mean the risks associated with case of a specific person, but the research and services associated with DNA sequencing in general.
Maybe 23andme is not the way forward, and eventually some other (better) services will arise, but we (humanity) are in something of an uncharted territory here, so there is need for a bit of trial and error. Yes there be dragons, and occasionally we'll have our eyebrows singed, but advances in medicine and biology (as your case highlights) are vast.
Sorry but this makes it sound like horoscope reading.
If you can't rely on it to make predictions and only use it to confirm preexisting ideas about yourself how is it better than pseudoscience?
To add to this, though genetic information may be protected against defining a pre-existing medical condition for insurance purposes today, there's zero guarantee that that law protecting you will still exist in the future, or extend to your descendants (which can be assumed to carry roughly half of your genetic material).
Once you've given this data away without any guarantee that it'll be destroyed at the end (if such a thing is even possible), you can't take it back, and you could potentially be screwing over those who didn't make that choice.
Additionally, while the SNP- format generic data provided by 23andMe is of marginal medical use to the average consumer, it is very valuable to insurance companies and others constructing population-level actuarial models, where a very tiny increased probability of developing a condition is enough to justify increased rates.
And finally, as these relative-discovery stories suggest, there really is no such thing as anonymized genetic data above a panel of a few SNPs. This data is part of the inherence class of factors in multifactor authentication, and can even be derived from pooled anonymized data by a motivated party.
Moreover, these tests are forbidden in France, so these shipments are being sent to Monaco/Italy (1 hour drive from here), adding extra levels of law/tracking indirection.
From ancestory to health risks there is so much BS out there. Some crappy paper correlates a SNP with a health risk and people freak out.
People should take results outside of heavily validated studies with a grain of salt.
The thing is, I actually agree with all your concerns about privacy, but I guess I just disagree about the magnitude of the concerns. Of course there are risks of being targeted for ads, or treated differently by health insurance providers. I can't really justify my stance, but I guess I'm just less worried about the possible downside than I was interested about the possible upside.
Either the world will turn into a dystopia or it won't. If it does, not giving out your DNA sequencing information is, in all likelihood, not going to allow you to avoid getting caught up in it.
No matter what dystopian world you live in, you will always be given the illusions that life is better as it is than it would be if you were free. They aren't going to throw you to the wolves completely. Instead, they will always present you with a dilemma: "As long as you only do X, you'll be fine, so there is no need to fight against it". In terms of privacy, there always has to be the question, "Why do you need so much privacy anyway?" If you answer that question, then you will break your balance (see recent Facebook "scandals" -- nothing changed except the general understanding of why people wanted privacy).
The advice to avoid problems is a pragmatic one. "If you do X, you'll be fine" is funny because people will say that and then forget to do X. "Well, I'm sure I'll be fine anyway". If you are careful to do X, then you can avoid many of the downsides. You can use that time to break free from your slavery. Umm... Or not... (usually people choose the "or not" option).
Also, I work in genomics and am a 23andme customer/product (although I was the latter before I the former became true).
Call me paranoid... is that sort of activity even regulated? Isn't this like a public image for photography?
What is stopping the government from collecting DNA at birth? yes.. it's not a law.. yet.
False ! Source : https://www.23andme.com/about/privacy/
We will not provide any person’s data (genetic or non-genetic) to an insurance company or employer.
- They never change their terms of service
- The demand for constant growth never causes them to reconsider ethically dubious revenue streams
- They never get acquired
Because it's an asset, and they are there to make money. Not because they are doing it out of the goodness of their own heart.
You can't take back information.
[1] https://www.ncbi.nlm.nih.gov/pubmed/18258915?ordinalpos=1&it...
I could easily envision that those same factors could contribute to a rise in intermarriages between 3rd and 4th cousins. For example, in small communities like "hill people" in the Appalachians, or the Hasidic community in NY.
Now, imagine what happens in a society with strict laws/rules/mores about this sort of thing? Well, we won't have to imagine for long. I'm quite sure my experience is a lot more common than most people realize, and I think much of the world isn't ready for it.
Nonpaternity is quite rare overall, and still unusual even when the putative father has so little paternity confidence that he demands a paternity test.
https://www.gnxp.com/WordPress/2018/12/04/how-paternity-test...
My grandfather was away in WWII when one of my aunts was conceived. As my grandmother put it, she was lonely.
All of the adults at that time knew, but kept it a secret. None of the kids knew until that aunt was about 45 and diagnosed with a cancer ... with a genetic susceptibility passed down though the male line. My grandparents figured it was time to reveal that secret.
I therefore conjecture that the numbers in the US were higher during WWII.
23andme gives relationship estimates for people based on percentage of dna shared, these estimates are based general population data. However they're not accurate for endogamous population like Ashkenazi Jews.
Any two Ashkenazi Jews who get married are likely to show up as cousins to each other, simply because there's so much shared DNA within that community. This isn't an exceptional case, but rather the norm for such populations.
https://www.researchgate.net/publication/8326382_Influence_o...
and for some wider background and reassurance see:
https://www.researchgate.net/publication/38114212_Commentary...
It could be a recessive trait (1 in 65536 doesn't mean "impossible")... but it could also be one of a near-infinite number of other possibilities.
Granted that was in France...
> Don’t believe the results. I’m retired FDA and investigated this company since its inception. 23and me swabs go to labcorp in NC. They aren’t a lab. They take the results and issue what is tantamount to a horoscope based on your demographic information. Save your $100 or whatever they are charging now.
I wonder if there are any estimates on how common unaware third-cousin marriages are.
Asked about the biggest mistake her startup made in the founding phase, she answered that " I think that we were overly optimistic about the state of scientific literacy in this country. "
And that is true in general. I live in Germany, I am a 23andMe customer, and from my results I learned quite a bit about myself. Locally, whenever I tried to talk about this genetic testing service, I have never had a deeper conversation about this subject matter, even with highly educated folks. It's similar to non-conversations about email encryption and IT security many of you readers might have had.
But what's more glaring is that her second conception occurred when she was 37 and her husband 39. There are studies that showed the increased incidence of child autism conceived from older fathers.
Disclaimer: I have not researched the scientific background of these thoughts. They are mere thoughts.
It made me uncomfortable to read about the autistic child at the end of the story. Was Autism more probable because of the closer genetic relationship of parents?
I was raised in southern India, and some of our families have a fascinating astrological tradition about not marrying someone from same "Gothram".
https://en.m.wikipedia.org/wiki/Gotra
Is it possible that our ancestors knew that certain genetic combinations were unhealthy/undesirable even without a scientific background and adopted these rules for the society?
and that's where the value of the blog post ends
It's not surprising some third cousins find out they are related. Maybe a fun read, but is it of any importance?
This kind of thing exposes secrets. Some of those secrets could be uncomfortable (I'm truly sorry you have to deal with what you discovered!), but some can be good. It'll be interesting to see how society going forward reacts to biological ancestry secrets not being able to be swept under the rug so easily.
My and my siblings’ children will also know some of their third cousins, and see them at least once every few years at holidays.
I’ve met a couple third cousins, and am fairly certain with any others (aside from that one branch of the family), we’d discover our relationship well before being together long enough to consider marriage.
That said, I wonder to what degree physical proximity plays a role. If the second cousins didn’t for the most part live in the same metro area as the entire rest of the family, we’d probably see them even more rarely than the set of first cousins who live a 3-hour flight away - which is to say, roughly once a decade.
Most years there would be a nearby annual family reunion of my mother’s mother’s parents’ lineage. I remember it mostly as a lot of older people I didn’t know, and none of them lived near me (the venue was a 2-3 hour drive from where I grew up, and I don’t know how far other people drove.)
But in my high school class there were definitely lots of people who seemed to be cousins with each other, and had massive family reunions in town. In high school my friends always joked about these extended family events as a hassle, but part of me thinks that perhaps I missed out on something there.
It’s interesting to think about the factors that influence a child’s experience with extended family. I grew up only two hours from where my mother grew up, while my father had moved quite far before meeting my mother. My mother had two siblings and my father had one, which is perhaps on the low side for America in that time (my parents were born in the 1950s).
Another interesting thing is that I have never met anyone outside my immediate family with my last name. My father only had one sister, who was married, so those cousins have a different last name. My father’s father died young (long before my parents met), and my grandmother remarried, so she had a different surname for my entire life.
I grew up in a very small town in a rural area, and I would have expected this to be the sort of place to be where people don’t move far from home and where extended families stay close together. But even my extended family in the same US state (but a couple hours’ drive away) was never super close to me. I barely escaped high school before social media went mainstream, so I wonder if I would have forged closer relationships with my extended family with the help of social media.
Yes it was known not to marry inside the family by our ancestors. I know several people who are suffering from various birth defects due to marrying very close and inside the family and yes it is told by the doctors.
Gotra is completely screwed up now. A system has to be taken seriously. If a person doesn't know his Gotra then he is just arbitrarily assigned one which becomes dangerous when done in huge volumes.
Also in India there are caste communities which are smaller and when they have to marry inside their families problems start cropping up.
There is a huge demand for home nurses and speech and hearing specialists in the Gulf region. This is because of consanguineous marriages very prevalent there. There are a lot of children born with mental or speech disabilities.
If you were Christian you would point to Leviticus 18:6-18 for the Biblical definition of incest. https://www.biblegateway.com/passage/?search=Leviticus+18%3A... .
As the Wikipedia page I linked to further states: "cultural anthropologists have noted that inbreeding avoidance cannot form the sole basis for the incest taboo because the boundaries of the incest prohibition vary widely between cultures, and not necessarily in ways that maximize the avoidance of inbreeding."
The further refinement of your question might be, how do the unique aspects of the astrological tradition affect inbreeding?
In order to test your hypothesis you would need to define gotras. I will quote from the Wikipedia page you linked to:
> the definition of gotra as descending from eight sages and then branching out to several families was thrown out by the Bombay High Court. The court called the idea of Brahmin families descending from an unbroken line of common ancestors as indicated by the names of their respective gotras "impossible to accept." The court consulted relevant Hindu texts and stressed the need for Hindu society and law to keep up with the times, emphasising that notions of good social behaviour and the general ideology of the Hindu society had changed. The court also said that the mass of material in the Hindu texts is so vast and so full of contradictions that it is a near-impossible task to reduce it to order and coherence.
"Couples who are getting married should be forced to have a DNA test first to ensure they are not cousins amid growing concern about incest within Pakistani communities, Britain's first Asian peer has claimed."
https://www.telegraph.co.uk/news/health/children/11723308/Fi...
[EDIT] Additional link from the BBC today: https://www.bbc.co.uk/news/stories-46558932
Relationships between cousins isn't always considered to be incest. It's more recent in the last 50-60 years, especially in USA, that cousin marriage is frowned upon based on misunderstanding the risk.
Looks like they even have a nice page about it: https://www.23andme.com/gdpr/
They're all pretty interesting, but the most impactul (read: actionable reports), for me, was: https://www.xcode.life/
[No affiliation, I didn't even get a discount :(]
Auto insurance is already well into the process of doing the same thing with regard to diagnostics data being transmitted back home from Snapshot devices/driver's aids.
That's the scary thing about these companies: you might never even use the service, but once a relative does, the company now has information about you.
To rephrase:
- there were some things in the report that I already knew, it was nice to see confirmation -> points++
- there were some things in the report that I suspected, but wasn't sure about, also nice to see it written black-on-white -> points++
- there were some things in the report which I had no clue about, but were easy to test if they are true or not (they were) -> points++++++++++++++
And to keep it fair: there were also things which didn't really apply at all.
But my point was, because I knew what to observe better, it was easy to keep the relevant stuff and ignore the rest.
...or to get your DNA they can work it out from the "deposited" DNA of your close relatives. There will be no hiding! :P
Would that be legal by today's laws?