Ask HN: What did you find in your DNA using 23andme?

50 points by choot ↗ HN
So what did you find on 23andme dna test which you aren't aware of and how did it change your life?

Let say if you discovered you've high amount of fast twitch muscle fiber and it motovated you to perform better at sports or smth.

70 comments

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My ideal wake time is 8:04am, I have fast twitch muscle fiber, I have lower odds of experiencing Parkinson's, Alzheimer's, and prostate cancer, and I'm likely to sneeze when the sun is in my eyes.

Nothing in my health report changed my life, but I have reached out to distant relatives I would've otherwise never known about.

I learned I have a little bit of Jewish and Arab ancestry, wouldn't really say that I was surprising though. I also found out I have something called Alpha-1, unfortunately there is not much I can do for this condition but it did provide me with a reason to lay back on the cigars and whiskey.
I have a mutation in the MTHFR gene, which causes my body to be much less efficient at converting folic acid to folate than most people. It is also the likely cause for why I have low B12 on blood tests. Solution: eat lots of leafy greens and take a folate (not folic acid) supplement.

23andme doesn't report directly on this variant, but it is in the raw results. You can run your 23andme file through promethease.com (for a small fee) to get a report on variants like these.

My spouse did it and the results provided by 23andMe were next to useless. It told her interesting facts like that she likely has no dimples (she has them), and other meaningless crap.

However, she downloaded the raw data and ran it through Promethease[0] and it did supply some useful info about potential drug interactions, which has been useful.

She supplied a fake name to them, used a gift card to pay for it online, and told them not to use her data for ancestry and to destroy her samples after processing. We've since learned here on HackerNews from people who claim to have worked there that they do not follow-through on their promises to do those things. I have no idea whether that's true or not, but it certainly sounds plausible and is infuriating.

[0] https://www.snpedia.com/index.php/Promethease

You violate the terms of their service when you use a fake name. If you don't want to use your real information, pay $1000 for a full sequencing. Their rates are lower because they're able to subsidize consumers with selling aggregate information to drug companies for rapid drug prototyping and development.

EDIT: I am astounded by the entitlement complex exhibited in the replies to this. You don't have to agree to their terms, but don't use the service if you don't. Especially don't be infuriated that they're not holding up their end of the bargain (supposedly not destroying samples) when you flatly decided not to as well (fake name). I don't understand why that is a difficult concept to accept.

If that's so, why is a real name necessary?
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Their rates are far lower than whole genome sequencing because it is a "Genotyping chip" or SNP Array.

They don't sequence your genome, they look for about 600,000 common SNPs.

If you do get your whole genome sequenced (as opposed to the outdated exome sequencing), you will get a lot of data but it will be difficult to utilize. 23andme has survey data + lots of customers, and can do this type of statistical genome-wide association studies (GWAS). With your whole genome, you will have much higher resolution data about yourself, but limited ability to leverage the additional data.

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I'm also not sure a fake name does anything. They can basically tell who you are from the DNA data itself.
> You violate the terms of their service when you use a fake name.

Is that really so horrible? There's no compelling reason they should even be asking for a name, other than to provide cross-references to law-enforcement.

I'm sure insurance companies would also be interested in matching names to genetic data.
https://ghr.nlm.nih.gov/primer/testing/discrimination

> Several laws at the federal and state levels help protect people against genetic discrimination. In particular, a federal law called the Genetic Information Nondiscrimination Act (GINA) is designed to protect people from this form of discrimination.

> GINA has two parts: Title I, which prohibits genetic discrimination in health insurance, and Title II, which prohibits genetic discrimination in employment. Title I makes it illegal for health insurance providers to use or require genetic information to make decisions about a person's insurance eligibility or coverage. This part of the law went into effect on May 21, 2009. Title II makes it illegal for employers to use a person's genetic information when making decisions about hiring, promotion, and several other terms of employment. This part of the law went into effect on November 21, 2009.

> GINA and other laws do not protect people from genetic discrimination in every circumstance. For example, GINA does not apply when an employer has fewer than 15 employees. It does not cover people in the U.S. military or those receiving health benefits through the Veterans Health Administration or Indian Health Service. GINA also does not protect against genetic discrimination in forms of insurance other than health insurance, such as life, disability, or long-term care insurance.

With regards to law enforcement, they can already perform a familial search in CODIS that will hit on related family members if present in the dataset [1]. One would assume the CODIS dataset will expand a greater rate than 23andme's, considering law enforcement resources.

[1] https://www.fbi.gov/services/laboratory/biometric-analysis/c...

How can I verify whether these laws are being followed?
If you suspect they are not, you would file a complaint with your state's insurance regulatory body (the name is different in each state, but easily obtainable through a search) and provide your evidence with the complaint.
And I care about violating their ToS why?

This is a service I'm going to use once - once I have the data from them, I no longer care about doing business with them.

What's the incentive for me to care about respecting their ToS?

Well, since subsidized pricing depends on you giving real information, then you make things worse for everyone else.

If you can only enjoy something (like a lower price while giving fake information) because everyone else doesn't, then it's usually a hint that your position isn't so defendable.

Like how the only reason the guy on the bus can enjoy his music without headphones is because everyone is courteously using headphones. I mean, sure, he doesn't care. "I'll never see these people again, why would I care?" But it's weak justification for taking advantage of a situation and I think we can do better as a society.

> subsidized pricing depends on you giving real information

I would love to see how you arrived that conclusion.

nobody cares - they're not entitled to use your data the way they do
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> Especially don't be infuriated that they're not holding up their end of the bargain

That's not how the law works.

Why do they need your real name to produce aggregate information?

I am astounded by your defense of this horseshit.

I generally find it interesting to know as much about myself as possible:

- Found out I'm the most neanderthal of anyone in my family who has been tested.

- that I have the "short" genes in spite of being quite tall compared to average and the tallest in my family in my generation, my siblings have the "tall" genes in spite of being closer to average or below average respectively.

- that I'm related to celebrity chef Mario Batali -- sort of cool before he turned out to be a rapist.

- that I have increased warfarin sensitivity... not relevant now but maybe someday.

I'm curious, how did you discover the Batali connection? 23andMe shared that?
They promote celebrity relatives. He's like an 8th cousin or something.
I highly recommend uploading your 23andme data to Promethease, which dramatically increases the amount of research matched to your genome and provides a better interface:

https://promethease.com/

I discovered that I have one copy of the Delta 32 mutation. Two copies provides nearly complete immunity to AIDs, but being lucky enough to have just one copy means that it will take significantly longer to get AIDS should I ever get HIV. Knowing that I'm resistant to noroviruses also makes me more comfortable about traveling.

I discovered I have a 7x risk of going bald, which wasn't exciting.

Beyond this, results have been too contradictory to make use of. Genetics are interesting, but our behavior has a much greater impact on our lives.

Promethease has a really bad and confusing interface in my opinion... 23andme is much better designed.
when did you last use it? I found it to be quite usable imho a few weeks ago
> Knowing that I'm resistant to noroviruses also makes me more comfortable about traveling.

This seems like one of the major downsides of these services. I think you would've been better off in life if you, say, did the traveling you wanted to do instead of let some genetic markers drive your apprehensions.

Word of warning. Take promethease with a grain of salt.

For example, promethease predicted a deletion in my genome (didn't actually observe a call, just inferred the deletion from linked sites) for a highly pathogenic disease in my data. However upon further inspection of the loci (I've done deep deep sequencing of my genome) it was a false positive.

Promethease is very very useful, but it shows you all the data including some of the more hairy sites. It is a great starting place but if you find a deleterious variant that may impact your health, follow up with your health care provider.

You mention a "deep sequencing" of your genome,, what does that look like?
Just stupidly high coverage. Something like 200x coverage over six replicates from blood and saliva. We needed DNA for QA purposes and I happen to have DNA, dontchaknow.
e3/e4 APOE. Decided can take more risk backcountry skiing and other outdoor activities (live fast, die young).
Doctor Rhonda Patrick's website allows you to upload your data to and have additional analysis done: https://www.foundmyfitness.com/genetics
Has anyone tried this? How were the results?
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I did it, and found it really interesting. It adds a couple layers of info on top of the basic results. Here is an example of the output.

PPAR gamma rs1801282(C;G) abnormal fat metabolism Peroxisome proliferator-activated receptor gamma (PPAR-γ or PPARG) is a master regulator of fatty acid storage and glucose metabolism. The genes activated by PPARG stimulate lipid uptake and adipogenesis by fat cells. It increases both lipid metabolism and adipogenesis in fat tissue. It increases insulin sensitivity in muscle tissue and increases gluconeogenesis in the liver. PPARG is mostly found in adipose tissue, colon and immune cells called macrophages.

You may have an abnormal fat metabolism. When people with the genotype (C,G) or (G,G) have a low polyunsaturated and monounsaturated fat intake and a high saturated fat intake then their obesity and type 2 diabetes risks are dramatically increased. But when there is a higher mono- and poly-unsaturated intake and a lower saturated fat intake their obesity and type 2 diabetes risk is normal. Polyunsaturated fatty acids activate the PPAR-gamma gene.

Monounsaturated fat is found in foods such as avocado, olive oil, and nuts. Polyunsaturated fats are found in foods like fatty fish such as salmon, herring and polyunsaturated fat is also found in nuts. Saturated fat is found in fatty beef, pork, butter, cheese, and other dairy products.

Individuals with the genotypes (C,G) or (G,G) may want to make sure their dietary fat is higher in mono- and poly-unsaturated fat and lower in saturated fat.

Pterostilbene is a plant compound present in blueberries, cranberries, and almonds have been shown to activate PPAR-gamma (and PPAR-alpha) and lower triglycerides, and blood glucose levels.

SNPs Involved rs1801282(C;G)

I am a South Asian. It told me I was of South Asian ancestry. Was hoping for something more specific than that.

I love me some coffee (drink more than 3 cups a day), and it said I am very likely to consume less caffeine. It also told me I have a high chance of having smooth hair, but I have extremely curly hair.

And I am extremely skeptical of their traits in general. Some of the traits include: "cilantro taste aversion", "misophobia" (likely to hate chewing sounds), "ability to match musical pitch", "fear of heights" etc.

I am guessing they find correlations between survey answers and presence of genetic markers. A lot of these traits would also be affected by nurture not nature.

Overall, I am not happy with the experience. I don't know if it is the current state of technology or regulatory concerns holding them back from releasing better results. Another reason for their lack of specificity could be the absence of South Asian data in their datasets. Most of the disease diagnosis is targeted towards people with Ashkenazi Jewish descent. Probably because they are much more present in their datasets.

Either way it seems like a lose-lose for me because on one hand I am getting mediocre results, but on the other I am relinquishing my privacy.

> Another reason for their lack of specificity could be the absence of South Asian data in their datasets.

In 2016, there was a 100:1 ratio for Europeans vs East Asians in their datasets. I don't know how it was for South Asians, and I imagine it's probably somewhat better now, but I think this is likely a big factor.

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Your comment made me go back to articles on data sharing 23andme does with companies. At first I read your statement about cilantro but it seems these are just the type of questions companies are paying big money for.

>For now, though, 23andMe’s biobank is the world’s largest repository of DNA samples that also contains extensive health information, willingly provided by customers who answer survey questions like “Do you like cilantro?” and “Have you ever had cancer?” 23andMe says its customers supply it with as many as two million new facts each week.

There’s only one problem—depending on your own ethics—and that is your data is helping pharmaceutical companies develop new drugs.

The continuation from the above quote:

>These surveys are proving valuable to drug investigators. This year the company found genetic variations strongly linked to whether customers consider themselves early risers, offering a clue about how to develop drugs that modulate alertness. [1]

[1] https://www.technologyreview.com/s/601506/23andme-sells-data...

That article was pretty helpful. Now I am entering the rabbit hole of reading about 23andme data sharing.

What strikes me as interesting is their current business model: customers are paying them and answering their survey questions. That is quite brilliant, they get specifics about the people in their existing dataset, and once a critical statistical mass has been reached, they can find correlations between traits and genomic data.

I would be happy to voluntarily provide my time, effort and data towards medical research. While I don't have ethical problems right now (I don't expect a lot of privacy anyways), there is a small nagging fear that these things could bite me 20 years down the line when these genomic tests are much more sophisticated and I have already given them my genome. Small benign hypothetical example: I start seeing ads about cilantro on Facebook.

That fear was overpowered by my curiosity to learn about my genome. That's on me.

My friend is a PhD in quantitative genetics and says that 23andMe is basically a shitty horoscope that costs some of your money and all of your privacy.
My father had Factor V Leiden[1], a mutation that increases blood clotting. He was hospitalized multiple times in his 30s, and died suddenly at age 50. After his first blood clot he was put on anti-coagulants and took them every day of his life.

There is a 50% chance to pass this mutation to your offspring, and I wanted to know whether I could be affected. I discovered that I did indeed inherit the same allele, and went to see a hematologist to discuss it. She advised that I not smoke and keep fit (unlike my father) and that I shouldn't worry about taking medication unless some evidence of blood clots appears. This was always a worry for me, not knowing whether I would suffer the same fate. When I sent my DNA to 23andme, I was 25 years old and wondering if I'd already lived half of my life. Getting the results and following up with a specialist gave me great relief and eliminated this worry pretty much entirely.

[1] https://en.wikipedia.org/wiki/Factor_V_Leiden

Is this not a test you could have got done a more conventional way?
Yes it is, and I did this test again on its own after seeing the hematologist. But 23andme offers much more, and when I saw that they offered 50% off on DNA day I impulsively bought it.
Not sure if this is why, but I know some folks who are concerned about getting such tests done at the doctor's office due to both cost, and the fact that it will go into their medical records (and thus possibly impact insurance).
That I have a Native American mtDNA haplogroup which is a bit of a surprise, but matches vague family legends
One thing was in there that was unexpected: I’m 3% Ashkenazi Jewish. I’ve never heard that from any relatives, and some have done extensive genealogy.

Additionally, something was missing that I expected to see: Native American ancestry. My family on my dad’s side had always talked about our Native American ancestry - only a few generations back from my grandmother - but the DNA showed absolutely none. I’ve since learned that this is actually quite common - many people believe they have it but few actually do.

I’ve read that in certain parts of the country it was standard practice to claim Native American ancestry to explain non-white features. At that time it was perfectly fine to be part Native American, but being part African would have been cause to lose your land, right to vote, etc. Interestingly, while I have a small amount of African ancestry, it’s not on that side of the family, so I’m at a loss to explain why so many of my relatives thought they were descended from a Native American.

> so I’m at a loss to explain why so many of my relatives thought they were descended from a Native American.

Because it's cool

I've seen anonymous "confessions" (who knows, take this with a grain of salt, just messenger, etc) that the employees will sometimes throw in odd results like that just to throw off/troll otherwise white Europeans.
Holy Hell, if true, that is incredibly unethical. Lying to people about something as personal as family crosses so so many lines.
I'm very curious to do one of these tests myself, but I'm also terrified of being in some large database that could be abused to my detriment someday. This fear might be unfounded, but I'm not really sure.

The whole thought of being targeted because someone found my DNA circumstantially near the scene of a crime, or discriminated against because I'm predisposed to some sort of medical condition, gives me pause. This might be senseless paranoia, or there might already be enough data from random family members taking tests, but you never know.

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My mom found out she had a brother she never knew about. Her father had another family from before her birth. Pretty crazy stuff.
This is -exactly- why I will never have my DNA sequenced (I'm the brother no one knows about)
Found out both my father and I possibly had a tendency to iron overload (or haemochromatosis). Blood test then found both of us to have very high iron stored in bodies.

High stored iron is linked with all sorts of bad stuff in the body, particularly CAD.

It described me as "nondescript Northern European".

It's not wrong, but I was expecting more.

How do you change your DNA if these companies sell or leak data? Is anyone offering a mass sequencing process that can safely change your DNA identity? If so, what are the risks associated?
I downloaded the "raw" data and by looking up the right genes, discovered I'm a "supertaster" (they have since added this as a trait in their own regular results). This confirmed something I've felt for a long time - almost all green vegetables and things like beer taste absolutely vile to me.. but now I know it's "real" and not just me being fussy.
I found the information about haplogroups interesting. It shows the migration paths out of Africa for both your mother's and father's ancestors (only men show the father's haplogroup). Not only was the background information about human migration very interesting, but the results also tallied well with our own speculations about parents' heritage.
Vitamin_D_deficiency

Alzheimer Apoe4

PPAR alpha/gamma - poor saturated fat metabolism APOE 2/3 - low risk for Alzheimer heightened risk for deep vein thrombosis (DVT)
Reading this reminds me of why I am so happy to tell doctors of that fact that I am adopted when they ask about my family medical history. It is truly a blank slate.

What good can possibly come of waiting to see if you might be developing some brain malfunction like your ancestors did? But hey.. to each their own!!