Private Genes.

November 18, 2013 6:26 AM

Who does genetic testing that is as interested in protecting my privacy as taking my money?

So someone on Metafilter suggested that '23-And-Me' site. Their privacy policy leaves everything to be desired. Anyone out there actually interested in keeping my genetic info truly private? Like, never matching my payment to my sample? As an adoptee, I am interested in everything that can be determined this way. But I just can't comprehend how anyone in this business would be so la-la-la about privacy.

posted by Goofyy to Health & Fitness (8 answers total)

Like, never matching my payment to my sample?

How would that even be possible?
posted by tylerkaraszewski at 7:09 AM on November 18, 2013 [2 favorites]

Are you concerned about something, or just trying to do the 23-And-Me thing where they tell you that MAYBE you're at risk for diabetes/stroke/Legionnaire's disease?

If it's the latter, then you're probably not going to be pleased with any of the privacy policies of any of these "for-profit" genetic testing companies.

If there's something you're specifically concerned about, i.e., breast cancer or colon cancer, and that you're aware of being in your family history (this seems like a long shot in your case), find a clinical geneticist or genetic counselor at a hospital in your area. Their privacy concerns are probably greater than yours!
posted by kuanes at 7:45 AM on November 18, 2013 [1 favorite]

Response by poster: tylerkaraszewski: Very simple: I make a payment. They send a sample pack. Sample pack has an ID code. No record is made to match it to my payment. I go on-line and register the code and create a password. Kind of thing has been done for AIDS tests.

I have no idea about anything that might be found. I am interested in both medical risks plus any info on what gene-pools my parents swam in.

kuanes: why would for-profit status indicate a lack of interest in privacy? Are they making profits from selling test results to the life insurance industry, in bulk?
posted by Goofyy at 9:41 AM on November 18, 2013

I don't think they're looking to sell results outright, I'm just of the opinion that they are going to do almost anything they can (within reason) with these results to make themselves money.

For example, 23andMe possesses your results IN PERPETUITY. That frightens me.

EDIT: As I look back at what you responded, I would also be wary of these companies' ability to tell you what you might get/be susceptible to. It's VERY early in this game, and in my completely unprofessional opinion, wait on this for a few years. The technology is moving up in leaps and bounds, and I think you'd rather wait for a genetic company being able to tell you "There's an 85% chance you'll develop diabetes in middle age" rather than "we think there's a 40% possibility that you may or may not be heterozygous for variants of an uncertain significance for a mutation in a gene believed to be associated with certain kinds of diabetes."

I kind of went high on the sarcasm-meter for the last fake quote, but that's kind of where they're at right now.

This will get better in the next 4-5 years.
posted by kuanes at 12:18 PM on November 18, 2013

A. The easiest way to do this with a place like 23andme -which lets you buy gifts of kits all the time-is to send your specimen in with a fake name and false date of birth. The only way anyone knows your specimen is *your* specimen is because you tell them so on the requisition. Don't use ANON123 as that may trip internal protocols but how are they going to know if Jane Smith is really Julie Jones? If you're really worried, mail it back from a distant post office with no return address. Access your data and they'll just think Jane is sharing it with/interpreting it for Julie-if they even care at all. Keep your demographic data reasonably close to the truth because their interpretative protocols are heavily driven by ethnic background, gender, etc. Note: if/when you take this to your MD/GC, they may not believe that Jane and Julie are the same person but that's a different issue.

B. I doubt the payment and bar code on the kit and subsequent results are as de-linked as you believe. There has to be some way to track "hey, I never got my kit/results."
posted by beaning at 5:42 PM on November 18, 2013

Response by poster: beaning: No, I didn't think they did that, that's just a method for doing it, one used, at least at one time, with AIDS testing kits, somewhere (god knows where. I've lived in 5 countries and 4 states in the last 17 years).
posted by Goofyy at 10:17 PM on November 18, 2013

Best answer: Goofyy - I think you are very right with being concerned about your privacy at www.23andme.com. Here is an interesting article about some of the privacy concerns with submitting your DNA information to 23and me as well as a way to submit your information anonymously.

I am not sure how well the method works that is described in the article as there are a number of "tricks" the author uses that you may not have access to. You may also be breaking 23andme's Terms of Service as they require you to register with your real name and do not offer the option to use their service without registering.

Personally, I find it frightening to submit such deep personal information as DNA to a commercial organization without having the ability to decouple my personal identifiable information from the DNA test results. Not only are there a number of situations in which the company shares your information, you are never sure what will happen with the information or with regulations in the future and it is not even clear whether you can ask 23andme to delete your information from their database.

Interesting to note that Google, one of the biggest suppliers of data to the NSA, is a lead investor in 23andMe. The idea of google combining DNA information with all the other information they have about me is very scary. What happened with "we will do no evil"?

National Geographic shows how to do this type of testing without linking personal identifiable information to the test results. If you are trying to find out your ancestry, their Geno 2.0 DNA kit allows you to get some deep insights about your ancestry (also available in Europe and Australia and currently discounted). You can also include your DNA results into the genographic project and thereby contribute to the scientific community.

I am unaware about a similar anonymous service to obtain health information from DNA.
posted by eurandom at 8:43 AM on November 23, 2013 [4 favorites]

Response by poster: The initial decision to avoid 23andme is going to stand for now. Getting started by participating in the National Geographic project. Will likely do one of the others next, probably familytreedna.com, specifically for finding who my relatives might be.
posted by Goofyy at 9:40 PM on December 18, 2013