spitting DNA in an evening dress...

[challenge]

Article here> http://www.nytimes.com/2008/09/14/fashion/14spit.html

In short, the lovely genetic companies got a good pitch in the NYT about the "safe and easy way" of doing genetic testing. Even more lovely is the guy who says, when asked what he thinks about the test, that "it's like checking a potential partner's financial record [checking her DNA profile that is]". Or that some of them already are joking and jabbing each other with "see... you need to watch your calorie intake since you have a higher likelihood of obesity".

I wonder if I am overly sensitive from my undergrad years when I took genetic counselling classes? Am I over reacting since I am worried what this might do to our dear fellow people in society? Or is it a good thing that will increase the general genetic knowledge?

I'm not even sure of this fora but let's leave it here for now.

[frogfactory]

Seems eerily like Gattaca to me.

[amy c.]

Seems eerily like Gattaca to me.

Amen.

(sigh) Very annoying how my old man keeps on being right. When Gattaca came out, he said, "Pay attention. This is coming."

Then he said, cheerfully, "And it's not my problem."

Actually what I thought was most disturbing was the woman at the head of the article who said, "I want to find out why I have freckles." At the end of the exercise, she'll a) be none the wiser; b) have freckles; c) believe she knows something. Also in the forecast: Absolutely stupid conversations about fate and destiny and God's hand in shaping your DNA; fashion-following doctors recommending the tests; talk-show hosts hectoring women to "spit before you commit"; gigantic bandwidth dedicated to interpretation of personal results.

Also, I notice that the reporter did not follow up on the "anonymous" assurance. Medical studies are a significant part of the economy in my town, and you're very likely to find some charming undergraduate asking you to participate in "an anonymous study" if you show up in the university hospital clinics. The studies aren't anonymous at all. All "anonymous" means is that your name and, like as not, Social Security number are one or two steps back from the final presentation of data. I suspect the same is true in these genetic tests, because after all they've got to be able to keep your DNA info tied to your contact and billing info. That means a credit card, and credit cards in the US are tied to SSNs, which are also tied to your Medical Clearinghouse file, which insurance companies use when they assign you to risk pools, and which, someday, employers will use when they do your background check. And in a land where the federal govt is interested in which library books you check out, I see no reason why they shouldn't be interested in your genetic data, too.

(CDC has the same privacy problem, in part because they don't trust people to report accurate info. When my daughter was an infant, I got positively harassed by whomever CDC had contracted to carry out an infant-immunization study. I was cooperative right up to the point where they wanted her name, SSN, and doctor's contact info, along with a signed HIPAA form allowing the doctor to release her medical info to CDC. At that point I told the phone person that the study was too intrusive of privacy. I got no fewer than 8 increasingly abusive follow-up phone calls; the last guy yelled at me that he was no less than a PhD in sociology, a professional database security guy, and a professional system administrator, and that I was singlehandedly ruining a very important study costing billions of dollars. I hung up.)

amy

edit: OK, I had a look at the 23andMe website and order process (plenty of info about ordering kits to use on your children).

-First, you cannot pay cash or by check via the website; credit cards only.
-Second, you have to go several links deep to talk to a person, and the only name given with a phone number is a press officer, so I take it they have no way of processing money orders, cash, or other anonymizing payment info.
-Third, the nicely-written privacy statement makes it clear that they become the intermediary between you and outside research units using your genetic and phenotypic data in studies; every so often a research group may go to them asking that "this person" participate in another study, and then 23andMe forwards the request to you.
- Fourth, you give up property rights to your data, so even after you delete your 23andMe account (or authorize it to be overwritten), you've permanently deeded your info away.

So, no, not at all anonymous. And what a racket! Essentially they collect and sell geno/phenotype data to research units, and they charge you for giving away your own information!

[scurry_imperial]

I hadn't thought about the use of this type of testing in checking on a potential partner's suitability or even about the issue of anonymity. I guess I'm more of the 'take it as it comes' philosophy of life school which is why I was surprised when a friend of mine said that he would be happy to get himself tested, mainly as a way of highlighting possible future health problems, such as prostate cancer. When I alerted him to the fact that 23andmMe had dropped their prices, there was no stopping him.

I would still demur, though I can see some sense in my friend's position. I share the reservations expressed above (and by amy c's prescient old man). The anonymity question is clearly a worry. But I guess I might be more motivated if I had a clearer understanding of how useful a DNA test was as a predictor of future health.

[challenge]

I'm a bit more awake now and the main concern I have would be that what do you do when you see that your child/partner/yourself have "that gene". Not to mention that "usually it's not possible to say how pentrable "that gene" is going to be in the end. Nor is it something that the medical company rep will tell you (since they most likely know) ... I am overly scared about "company people who sell tests to tell me what they mean". Even more skeptical since it is the big company that bought the whole of Iceland's genetic database, complete with family trees and disease patterns.

I mean really, you think they care about "the people who test"? Nahh... allow me to be skeptical.

Then of course it is what amy talks about. The "anonymity" that is sheer as a veil, if even that. I bet you that soon we will have some kind of match game show with "let us test you and see if you really fit together" with alleles and recessive genes. (maybe even sponsored by the insurance companies ... )

Lucky me, I can already say with certainty that I have some recessive genes in doubles since I am both left handed, being a woman, freckles and greenish eyes (then I even leave out the extra cartilage that also is most likely coupled to the other recessive "weak genes stay together")

[amy c.]

I am overly scared about "company people who sell tests to tell me what they mean".

I'd say you're right on. One of the co-founders (haven't checked on the other yet) is a longtime pharma sales and marketing person. Apparently the whole idea of 23andMe is target-marketing drugs:

http://www.huffingtonpost.com/linda-avey-/

So, you know. Yada yada scientific-world-in-perfect-harmony-share-your-DNA for better drug marketing.

Oh, there we go. I'd forgot, the other one's married to Sergey Brin. More save-the-world-for-pharma-sales in her entry:

http://www.huffingtonpost.com/anne-wojc ... linda-avey

I love the description of "database we build with your genetic info" as a "common, standardized resource" for the public good. No money in there nohow.

[scurry_imperial]

I appreciate the anonymity concerns mentioned above; I wonder if they would also apply to users from outside the US?

By the way, there was an interesting twist on the 23andMe story on Sergei Brin's new blog yesterday...

[challenge]

By the way, there was an interesting twist on the 23andMe story on Sergei Brin's new blog yesterday...

THanks for the link.

This qoute is some of the stuff I'm not really sure on how to interpret (and somehting we talked about a lot in the genetic counselling class I took at UBC years and years ago...)

"This leaves me in a rather unique position. I know early in my life something I am substantially predisposed to. I now have the opportunity to adjust my life to reduce those odds (e.g. there is evidence that exercise may be protective against Parkinson's). I also have the opportunity to perform and support research into this disease long before it may affect me. And, regardless of my own health it can help my family members as well as others."

Substantially predisposed of is accoring to him just further up: "it is clear that I have a markedly higher chance of developing Parkinson's in my lifetime than the average person. In fact, it is somewhere between 20% to 80% depending on the study and how you measure". I'm sorry but here is what I seem as a HUGE problem. So, we have a gene that "depending on how you measure it" [which company who looks at it?] gives me between 20 and 80% more likelyhood of getting sick in this specific disease. Well, I am not sure that I am ready to jump through hoops and make happy sound that I can worry all my life about a disease that might be as low as 20% higher..... There are plenty of diseases and conditions that have more than 20% higher than average, say for example working in a smoking environment (waitresses in bars) or having high cholesterol etc....

I'm not sure that it is "good" to know but sure enough, some people might want to know these things so they can take precaution [not really sure on what exactly he is rtying to prevent but maybe never having kids?*]

The last sentence is something we talked about extensively over half a year. How much ethical responsibility do you have to tell your family members about "your" gene. How much right do you have to tell them something that they might not even want to know? Or if you don't loook for yourself, how much is that going to hurt them?

I would be interested in what the company says about this when they test people for all these genes. Do the tell them to tell their family members about thier findings and tell them to also get tester [lots more tests = more money]. Do they get better treatment wiuth some drugs [do the company have some collaboration with detection of genes and then subsequent medicine for these diseases?]

All these are questions I'd rather not face. But granted, maybe I just liked Gattaca too much..... or A brave new World... and we are actually never going to be that relying on gene tests and sorting people accordingly?
*yes, I think this is one of the things that will make these tests scary. The whole "don't let genetic bad people reproducem although we all know that random mutations makes lots of things too"

[amy c.]

20-80% greater than what? What's the average risk? OK -- a Mayo press release puts it at about 2%. So Sergey's all the way up to almost a 4% risk of developing Parkinson's. Maybe. I'd say the bigger threat to any kid of his is the oceans of money. I'd put the risk of the money screwing up the kid at a cool 90%.

This is also why I get annoyed with games of disease craps -- people get all freaked out about small numbers without recognizing what they're doing. I won't bore you (or myself) again with the Breastfeeding Mob Ridiculousness, but that's all it was, nonstop. Disease after disease your kid had a 400% greater chance of developing if you didn't breastfeed, but the kid was starting with a baseline risk of 0.02%.

[frogfactory]

Isn't that rather high for 'disease after disease' (presumably mostly statistically independent for the numbers given,and variously nasty), where this vastly increased incidence is very easily preventable?

[Mad Dan Eccles]

I won't bore you (or myself) again with the Breastfeeding Mob Ridiculousness, but that's all it was, nonstop. Disease after disease your kid had a 400% greater chance of developing if you didn't breastfeed, but the kid was starting with a baseline risk of 0.02%.

which is crazy talk—no one seriously believes that breast feeding is anything but ideal anyway, do they?

(Obviously some women can't, blah blah, but still. )

[amy c.]

Dan, some of us in the US have to, or want to, do things like work, travel, and go to school while the kids are babies, and are not free to disappear somewhere to pump every few hours; others find that breastfeeding means unending bouts of thrush, mastitis, etc. Others work part-time and take care of other kids, which means being able to sleep through the night early is a valuable thing. So there's a large contingent of "it'd be nice but" mothers. We've got a very active breastfeeding-promotion movement here, though, and they aren't always keen on recognizing other people's realities, so will happily bash others over the head with scare stats, lobby women to take drugs off-label to increase milk production, etc.

[Mad Dan Eccles]

All of which does not detract from my claim.

[frogfactory]

I'm not sure quite where you're coming from, Amy, though I'm fairly sure I disagree with your standpoint; but I don't think it's really got much to do with the DNA testing issue.

[amy c.]

All of which does not detract from my claim.

Not a bit. I'm telling you why the statistic-waving happens in the US.

FF, my point is that it's meaningless to tell someone they've got an "80% greater risk of developing a disease" if they don't know the general-population risk of developing the disease in the first place. Doesn't matter whether you're throwing the statistic around after DNA testing or after hearing that some woman's bought a can of formula, but it's done routinely, and people run around scaring themselves and others that way.

(As it happens, yes, there are breastfeeding v. formula studies showing incidence of various diseases after formula feeding at some multiple (not necessarily 4x; some smaller, some larger) of the incidence after exclusive breastfeeding. Most of the diseases start out with a low, or very low, general-population incidence. The major exception is GI/upper-resp infections, though you undo your good work if you send the child to daycare. It's five years since I looked this stuff up, and I don't recall those GI/resp numbers, but what I took away was: If you're going to send your infant to daycare, give him a fighting chance and breastfeed. In the US, the problem is less easily solved than you may imagine, by the way. The norm is still to be back at work after six weeks, faster if you're in academia. We've got a work/life person on staff here who's made it her mission to get rooms made available on campus for nursing mothers, some quiet, private place where you can go with your miserable pump. Took her years to get enough sites to put out a map, and some of those "lactation rooms" (charming, no?) are still chairs crammed into bathrooms. Women who work in cube farms have similar problems; women on the clock have trouble getting time for pumping breaks; and I've heard horror stories involving all-day academic interviews. Essentially women go around sort of hiding the fact that they're breastfeeding, because employers and other staff don't want to know about it or have it take up time/room. Not, of course, that it's got anything to do with DNA.)