Maybe we could turn it into a Zentangle?

December 9, 2013 5:19 PM

As a Christmas present, I bought my 10-year-old daughter a 23 and Me kit. Shortly after it arrived, I received an email stating they would no longer provide health-related information and offering a refund. Should I take the refund (which would inactivate the kit) or go ahead with it?

I thought this would be a good present because she is interested in science and technology. We heard a piece about it on the radio, and she thought it sounded cool. I think the ancestry results alone would be pretty interesting, and they will also deliver her raw genomic sequence, which she may be able to do something with in the future.

The health results were also interesting to me - she has some minor-ish chronic health problems, and it would be useful to know if other things might be on the horizon for her. That information won't make a lot of sense to her, and not having it won't impact her enjoyment of the gift.

I trying to decide if the package is now "worth it." On one hand, I feel like I'm not quite getting what I paid for, but on the other I'm paying $99 bucks to get my kid's GENOME sequenced. As a Christmas present, this is somewhat more on the expensive side, but it is completely affordable and does not represent a financial burden or sacrifice at all.

Is this still a good deal? Or should I opt out and hope for FDA approval next year?

posted by jeoc to Science & Nature (16 answers total)

I say do it. First of all, you still get the ancestry info.

Second, you can (or at least you could, at one point -- you might still check if it's still available) download the raw data. If she were so inclined, she could learn how to analyze the data herself. That may be a bit beyond the skills of an average 10-year-old, but perhaps not, with help from someone.

It would certainly be a great way to learn the science, anyway.

(Adding: Oh, I see you already know this. There's a MF thread somewhere, BTW, on free software for analyzing the data, I believe.)
posted by mikeand1 at 5:25 PM on December 9, 2013

I think she'd still think it was pretty darn cool.

In fact, it might even be better this way, as it will save her the anxiety of having what amounted to a lot of speculative, unregulated health info thrown at her.
posted by Lutoslawski at 5:27 PM on December 9, 2013 [5 favorites]

I have the same conundrum, just bought 3 kits and now I can get a refund. I decided I'm keeping them, because you can still get the raw data and use another service to analyze it. Eventually 23andme will get right with the FDA, and I'll be able to see the 23andme take on the health data. Read this Reddit thread for more info on the options. I'm definitely doing Promethease (same idea as 23andme for free up to $5). Not as nice as 23andme was, but good enough. I'm going to look into Genetic Genie and the additional nice apps for genealogy and health mentioned on that thread, it's very exciting.
posted by evariste at 5:43 PM on December 9, 2013 [2 favorites]

I don't know whether you should accept the refund or not, but I wanted to correct a misconception:

I'm paying $99 bucks to get my kid's GENOME sequenced

23andme and similar analyses don't sequence a whole genome per se. What they do is check a bunch of different spots on the genome and measure which version of known human variants the person has. It's a rough estimate of what a whole genome sequence can do: for example, it won't capture rare mutations that only your daughter or your family have.
posted by quaking fajita at 5:44 PM on December 9, 2013 [7 favorites]

Best answer: I think the ancestry results alone would be pretty interesting, and they will also deliver her raw genomic sequence, which she may be able to do something with in the future. [...] On one hand, I feel like I'm not quite getting what I paid for, but on the other I'm paying $99 bucks to get my kid's GENOME sequenced.

To be clear: you are paying $99 to get information about what variations she has in specific genes of interest. You are absolutely not getting her full genome sequenced, and the method that 23andme is using is not even capable of generating that sort of data. The raw data you access will be small portions of her genome sequence (quite literally, which DNA "letter" she has at those points, and nothing more) in those specific genes of interest and no others. As we learn more about those specific points of genetic variation, it may be possible to return to the results and re-interpret them, but if we find new interesting genes to look at, or new gene variants in different parts of an already-studied gene, no information about these areas of her genome will be contained in the raw data you receive. This is what your raw data will look like (scroll down to "Data" - those letter pairs that look like AC, GG, etc. are the raw data, indexed by their location in the genome and the name of the region of interest.)

Regarding the lack of health results: they are not providing health reports any more, but it is not clear that they are no longer testing for health-related gene variants. (It appears to me that they are continuing to sequence them, in fact.) There are third-party ways to analyze the raw data (e.g. Promethease.) This being the case, it would still be possible to examine health-related regions of interest - although the same caveats that applied to 23andme's reports still apply to any analyses that your perform with third-party tools. (Namely, that without any expertise, it can be very easy to misinterpret any results and any potential risks detected.)
posted by ubersturm at 6:02 PM on December 9, 2013 [4 favorites]

If you want to give your daughter some trivia information about her genome and ancestry, 23 and Me is a pretty good deal at $99, I think. If you want your daughter to have actual information about her health, get a referral to a genetic counselor. The reason 23 and Me is no longer allowed to give health-related information is because that information is positively dangerous out of context.
posted by mskyle at 6:09 PM on December 9, 2013 [1 favorite]

It is probably also worth pointing out there is no verification of the accuracy of the data 23andMe provides. Part of getting right with the FDA is providing proof of quality control measures and accuracy of their measurements, and they have been refusing to provide that information. It's a fun little thing but not necessarily meaningful or correct.
posted by Anonymous at 7:38 PM on December 9, 2013

To be clear, the FDA decision has absolutely not changed the 23andMe service at all. You were paying for a SNP array and you are still getting a SNP array. All the FDA did was order 23andMe to stop bundling in a bunch of useless and borderline irresponsible speculation about various things that correlate with your SNP array data. Unless you somehow thought you were buying your daughter genetic counseling, you should not value the restricted 23andMe service any less than you did before.
posted by d. z. wang at 7:41 PM on December 9, 2013

I feel like I should disclose that I personally signed up for one of the free early trials and did not return my sample container because of some probably overblown privacy concerns. My decision should not appreciably affect yours.
posted by d. z. wang at 7:43 PM on December 9, 2013

Best answer: I actually think the kit is better without the vague health information, especially if a kid is the intended recipient.

When I was 10, I was a little precocious and also into science and technology, so I would have really loved a 23andMe kit. However, my personality is such that I'd still be obsessing about any possible hereditary health issues it revealed now, at age 25. For the average bright, science-loving preteen, genetic ancestry data is a pretty cool gift. Information about vulnerability to health issues is kind of a big old albatross. Nobody wants to hear "Merry Christmas, contemplate your own mortality!", especially not a child.
posted by easy, lucky, free at 9:10 PM on December 9, 2013 [5 favorites]

Do it.

You're *not* getting exactly what you paid for, and that's why they're offerring you a refund.

Everything else you said makes it sound like it's still worth that price to you, though.
posted by teatime at 10:26 PM on December 9, 2013

Same thing happened to me. The health stuff is interesting, but it's the ancestry stuff that's fascinating.

I decided to go ahead. The FDA may allow them to provide the health stuff in the future, so when it comes, it comes.
posted by Ruthless Bunny at 5:10 AM on December 10, 2013

I am in exactly the same situation right now (except that I bought it for my mom). I actually prefer the test without the health information, as I don't consider the level of analysis they do to be trustworthy and I was worried my mom would not consider that information to be actual medical advice and not at the level of entertainment.

As a nerdy kid, I would have thought that DNA in my spit getting analyzed would be pretty amazing. I'd keep the kit. If you are concerned about heritable disorders, get a referral to a genetic counselor.
posted by tchemgrrl at 6:17 AM on December 10, 2013

There's plenty of fun stuff on there for a kid. She will find that she has distant relatives all over the globe, for instance. They give a speculative "Neanderthal DNA percentage" which could get her interested in evolution and archaeology. Also as others have noted, you can download the raw data and upload it to tons of other sites.
posted by hamsterdam at 9:00 AM on December 10, 2013

I have not looked at what 23andme offers for that service, but if the ancestry part of the service is what is interesting to you, have you checked out The Genographic Project from National Geographic? You get similar information and data visualizations, but it also has more of a cultural bent and benefits to indigenous cultures, if that kind of stuff might be more interesting to your kid. There are also more participants than 23andme.
posted by homesickness at 2:26 PM on December 10, 2013 [1 favorite]

Response by poster: Thanks for the clarification about what the service actually provides. I realize in retrospect I was a little fuzzy on the details.

I am unusually qualified as a non-medical person to interpret the health data (having done graduate-level work in public health and therefore having a very clear understanding of what percentage risks mean). But my kid, not so much.

I'm wrapping it and placing it under the tree, and looking forward to finding out how what percentage Neanderthal she is!
posted by jeoc at 6:30 PM on December 10, 2013