Monday, October 20, 2008

DTC says "Steal your baby's genome....it's fun!"


One of the big things 23andMe has emphasized in the past is that their data is not to be used to make medical decisions.....


This from Forbes when the regulatory heat was on in the spring.

Then their consent notes that their kit is not for medical use:

Furthermore, 23andMe's service is not a test or kit designed to diagnose disease or medical conditions, and it is not intended to be medical advice


Then their blog lists their terms of service which includes.......

23andMe does not recommend or endorse any specific course of action, resources, tests, physicians, drugs, biologics, medical devices or other products, ...


So naturally when I read the interview of Linda and Anne with Emily Singer at TechReview I was a little surprised....to say the least


TR: What will be one of the first examples of genetic information someone might use to make a medical decision?


Wojcicki: One of the areas we've talked a lot about is pharmacogenomics--being able to say, should you take ibuprofen? Or if you have a new baby and you're flying to Europe, should that child take Benadryl, or will it make them hyper?


Ok, Ok, this is the hype that will kill genomics. Unless I have been asleep for the last 6 months, some things have changed.


1. 23andMe is now stating that people can use their tests to make medical decisions......

2. They are moving into pharmacogenomics, but not providing medical advice

3. They are using a BOGUS example (Benadryl response) and not stating that this is not a genetic reality TODAY.

4. Lastly, the implication is that as a parent, you can test your child's genome without their consent is abhorrent and unethical. Even the remote possibility of being able to do that with their kits is scary and needs to be investigated.

This is where the straw breaks the camel's back.

Anne, are you serious? Do you really think it is ok to test your child for a hypothetical benadryl response(which has no basis in any reality out there)? Have you lost it? Have you heard of informed consent? OMG! This is crazy!!!!!

This, ladies and gentlemen is precisely why I am so concerned about what is going on with this and other companies. The CEO of this company thinks it's ok to take a swab or saliva from your child and test it for millions of SNPs just so you can dope the kid up on a trip to Europe. Most likely without their consent! Is it for any health benefit at all???? Oh, I guess we should allow parents to have their kids drug tested "just because", or force our kids to have pregnancy tests, or better yet, let's just call this what it is "Stealing your child's genome and exposing it to discrimination and risk without their consent"

You see, I knew this would come out. There is a lack of maturity at the highest levels in this company and a significant lack of concern for privacy and personal risk.

The Sherpa says: Wojcicki: One of the areas we've talked a lot about is pharmacogenomics--being able to say, should you take ibuprofen? Or if you have a new baby and you're flying to Europe, should that child take Benadryl, or will it make them hyper? I am appalled and speechless. Stealing a genome, to make a faulty prediction and expose your child to risk. I hope Linda will set this one straight......and a "No one was implying that it is ok to steal a person's genome" quote just won't cut it. This could kill DTC completely if the regulators read about this!

7 comments:

Anonymous said...

23andMe practices medicine and we know it. For crying out loud, they test your genotype for EAR WAX. Yes, ear wax. Umm, why?

Anonymous said...

Wow, I didn't know the Board of Directors at 23andMe are only educated at the undergraduate level.

Anonymous said...

Tsk, tsk, personal genome testing companies:

Lack of association of two common polymorphisms on 9p21 with risk of coronary heart disease and myocardial infarction; results from a prospective cohort study

http://www.biomedcentral.com/1741-7015/6/30/abstract

Steve Murphy MD said...

@ anonymous ear wax....I sense your sarcasm, everyone uses the ear wax argument....it is naive....

@ anonymous 2
But she got it at Yale ;) home of the naked co-ed party

@ anonymous 3....I knew there was a reason I didn't approve this for ICOB....the real answers are going to come out with prospective studies....but heck, what 399 USD between friends

neandrothal said...

There are plenty of tests and drugs given to children for which they don't provide informed consent. Informed consent is not the straw that breaks the camel's back--it's the weakest part of your argument!

Steve Murphy MD said...

Andro,
Love the call sign!
If you are talking about TPMT pharmacogenomic testing before the medication 6mp, you are talking about a sick kid who needs treatment, NOT a kid who needs sedation to not cry on a plane ride....more importantly, why in the hell test all those other SNPs just to find out the one piece of information you need? Because it is cheaper? In the beginning maybe. But in the end?

Also, why give that kid's data/dna to a company who will then take ownership of it?

But the most distressing part is.....if this mom can take her kid's DNA without consent....what's to stop a criminal from stealing your DNA???? We see this in crime solving already.....

Is it legal to take DNA left on a drinking cup??? What about to do things that aren't of benefit?

Slippery slope this DTC testing thing, methinks......

-Steve

Steve Murphy MD said...

Oh, but doesn't that mother have a right to know her child's code????

The answer......NO, absolutely not. That is that kid's information. It is the same reason why can't force children to take drug tests or pregnancy tests if their parents ask us to....if it serves no health to the child....doctors won't do these things and step on the child's autonomy.... Major ethical concept........Tough to swallow for a business not built on ethics.....But a pretty solid and simple concept.

-Steve
BTW I still love you Andro, I just don't think the company is doing it the right way.....and that lies in the leadership....

p.p.s. That benadryl example is garbage and they shouldn't let the public think it is not...