Home DNA tests: "Total cost= $1900; Value =0"


#1

Originally published at: https://boingboing.net/2017/11/14/home-dna-tests-total-cost.html


#2

It costs a helluva lot more than that. Letting these companies sequence your DNA makes uploading your contacts to Facebook look like child’s play. Worse, you’re potentially exposing your near genetic relatives due to the similarity of of their code to yours.

I honestly don’t understand why no one’s been raising the alarm bells about this. Plenty of people who lament the commodification of identity by social media companies are smart enough to understand the same risks apply to genetic sequencing, but you hardly ever hear them mention it.

This is a terrible idea sold through fear-mongering and savvy advertising through YouTube sponsorships of channels targeting the innately curious techie aspirants.


#3

It has been interesting for my daughter and I to compare the results of our genetic testing, as we have extremely different genetic origins.

But we anonymize everything, there are no names associated with the data, just sample numbers. I’ve been pretty strict about that.


#4

AncestryDNA (supposedly) will nuke your data if you ask, which I did after downloading the raw data.

There are a variety of tools to generate reports on the data, but it is the same problem: how much do you trust them? Once you have the data, it is something you can look up yourself since the genes are labeled well.

Of course the best way is to have your doctor order the tests. Extra care is taken I guess to weed out errors? I think once a HCP has that data, it is illegal to share with anyone due to HIPAA (even insurance companies).


#5

My inexpert medical understanding is that the errors are less a consequence of sloppy analysis and more a lack of understanding of much of the human genome.

Understand that I’m not in principle against DNA sequencing. In fact, I think it’s a wonderful technology with enormous potential. But trusting these companies is a terrible idea.

I’m not trying to be a worrywart, but anonymity is a thin veil in today’s datamined world and DNA is by definition not anonymous. I’d be less concerned if the Right wasn’t hellbent on taking away the few tenuous protections afforded medical patients.


#6

Also not an expert, but when I downloaded the raw genome it gave a warning about it, “lacking the rigor necessary for medical use” . I took that to mean that medical use runs it a bunch of times and then looks for a consensus on areas that differ between runs.


#7

Sorry, but I find the title of this article misleading. The title suggest that home DNA tests could cost up to $1900 and have no value. However, the content of the article and links is commenting on the aftermarket apps and up-sells that are trying to trick people who have already purchased DNA testing to buy garbage that is not backed up by science.

The smartereveryday video on DNA testing is pretty good as an overview to the testing IMO (https://www.youtube.com/watch?v=U3EEmVfbKNs).


#8

Perhaps. I’ve heard several accounts where customers of multiple services reported receiving dramatically different analyses depending on the fact that different parts of the genome are analyzed and there’s at best still only a vague understanding of what most of the genome does.


#9

Couple of things:

  1. I did 23 and me 99 dollar version totally anonymously. Used a prepaid credit card purchased with cash, totally fake data submitted for the registration.

  2. I suggest using https://www.snpedia.com/index.php/Promethease for the literature linking based on the results from most DNA testing.

Then you do not have to pay for any up sells on the data.


#10

The next step: Get those genes whiter than white!


#11

I can second Promethease. It’s what I did with the raw data.

Yeah, I mean. Their ancestry summary, that could very well be. With the raw data in hand, near as I can tell, it’s the volume of data it should be for the ~1% of DNA that is unique to humans.

But as to different results with different services, my brother came back with 23% Native American. Me, basically all European (1% European Jewish, and less than 1% Middle Eastern).


#12

I just read some of the youtube comments from that video…Ugh. My brain is scarred with the stupidity.


#13

Yeah. This guy, “Jeez, this comment section is toxic as fuck.” He must be new to Youtube.

On the other hand, I’d rate it as slightly better than your average YT comments section.


#14

A new use for CRISPR-Cas9: editing those nasty black genes right out of your DNA!

Side effects may include albinism, death, and extreme stupidity.


#15

additional medical tests that showed Ms. Christ had life-threatening blockages in three coronary arteries

Getting her cholesterol under control was certainly because of the genetic testing rather than finally going to a competent doctor


#16

Are you disappointed with boing boing? I’ve not paid a huge amount of attention to the headlines, so I don’t know if they are more click-baity now than before.


#17

Pretty sure that extreme stupidity is a pre-existing condition where white supremacists are concerned. The albinism and death are still a worry, though.


#18

Well, they can’t be more than 50% different, right?


#19

I didn’t clip this from Ancestry’s site, however: Specifically, by submitting DNA to AncestryDNA, you agree to “grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, world-wide, transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.”


#20

She was adopted at birth; I’m a big advocate of negative population growth and there’s plenty of children who need parents in every American city… we are extremely divergent, genetically, so it’s been a good teaching process.