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Comment by 23AndAllOfYou | Hacker News Reader

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

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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.

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If you do get your whole genome sequenced (as opposed to the outdated exome sequencing), you will get a lot of data but it will be difficult to utilize. 23andme has survey data + lots of customers, and can do this type of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.

> 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.

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

I am astounded by your defense of this horseshit.

If that's so, why is a real name necessary?

I'm also not sure a fake name does anything. They can basically tell who you are from the DNA data itself.

nobody cares - they're not entitled to use your data the way they do

> Especially don't be infuriated that they're not holding up their end of the bargain

That's not how the law works.

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