Thursday, October 30, 2008

Take that atta boy Back! Time to use sound judgement against 23andMe.

I would like to take the Atta Boy back.


Huh? Yes, the one I gave 23andMe. Yes I commended them for destroying a DNA sample and confirming that they are only testing your DNA, one time and then destroying the whole sample.

Why might I take that Atta Boy back?

Because they are acting like business people again.........

In a not so certainly socially responsible move, which was alluded to by the Girl with the BS from Yale Anne.

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?


Why? Well, everyone in marketing knows it is WAY CHEAPER to get a previous customer to buy again, than it is to find a new customer........

In this case, that customer can "coerce" their little one to donate 2ccs of saliva and their DNA (which BTW is not that much) but could cost a ton!

Well, as Daniel points out.....The professionals who have been doing genetic testing for the last 30 years or so have gone round and round about the ethics of testing minors. The conclusion is that if there is nothing that will immediately impact their health or endanger them, it is probably not the best to do genetic testing on a child who is incapable of consenting. Even then you can not expect the damage that may be caused......this case study indicates that..nonetheless, there is a debate. Between those who care for patients.....But 23andMe never took the Hippocratic Oath.....I Did....Primum Non Nocere! "First do no harm!" Some even advocate the screen the parents for the maturity and ability to comfort their children PRIOR to testing.....That is probably the best modality to please both sides!!!!

More importantly, it is probably a moral quandary when you remove that child's autonomy in a situation where it is extremely unlikely that the results will do anything to better that child's health or well-being.

So I can hear the argument now. Well, if I learn about the parkinson disease that my child is predisposed to, I will be better able to help them prevent it....

Bul1$h!t.....Which 23andMe test can do that. And BTW.....aren't they NOT practicing medicine.....and Aren't you NOT supposed to use this information in medical decision making???
Not according to investor Harvey Weinstein....
This is a blatant attempt to get more tests in. Even worse, this is an attempt to do a cohort study on child participants without the ethical oversight.

Once again. Shame on you 23andMe, just when I thought you were coming around....I begin to realize what you are.....an unethical scientist..........



2. No special provision for those special subjects (in this case children)

Instead what you offer is a silly blurb on your Q&A board!


Can I use the saliva collection kit for infants and toddlers?
The saliva kit we provide for participation in our service is not optimized for children under three years of age. If you are purchasing a kit for an infant or toddler, it may be difficult to obtain the required amount of saliva.


This is it. I have had it.....

Every time I think you are doing something good.......you crap all over it by doing these sort of things.....essentially ideas that could only be hatched by someone who is not mature enough to handle the technology!


Here's your out.....just say your investors made you do it.........

Russ, how can you advise them that it is ok to do this???????????

From the Department of Health and Human Services


The special vulnerability of children makes consideration of involving them as research subjects particularly important. To safeguard their interests and to protect them from harm, special ethical and regulatory considerations are in place for reviewing research involving children. Title 45 CFR Part 46, Subpart D provides for "Additional Protections for Children Involved as Subjects of Research." Research that is contrary to the rights and welfare of child-subjects is prohibited. A good summary of the ethical considerations surrounding research involving children can be found in Levine (1989).

Just to remind everyone...children are vulnerable subjects and should be treated as such......not as a hassle that needs to be sedated on a transcontinental flight.......


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?


You keep doing it again and again.....Putting a research scientist on your blog who had said that finding out if you were at risk for Multiple Sclerosis was "Fun" and having her tell who she unethically tested her kids is not exactly responsible either....

The boys do share the Alzheimer’s disease-associated APOE gene region at 100%, however. So even though we don’t know their genotypes because 23andMe doesn’t report on that gene (yet), we know the boys have the same genetic risk.

So how do you counsel that Joanna?????


The Sherpa Says: For those who have the power, they shall lose it if they don't demonstrate responsiblity.....this election will demonstrate that.....hopefully the government will be responsible and not let their citizens expose their children to risk without some consideration first. 23 and Me, get an IRB......Your actions and comments are starting to reveal your hubris....





7 comments:

Anonymous said...

Dude, you're more volatile than the Dow.

Anonymous said...

Quote: "The professionals who have been doing genetic testing for the last 30 years or so have gone round and round about the ethics of testing minors. The conclusion is that if there is nothing that will immediately impact their health or endanger them, it is probably not the best to do genetic testing on a child who is incapable of consenting."

I just published an article on this very topic a few days ago. In my research, I found that it is not ethical clinically to test a minor for a genetic condition if there is no need for treatment. The child can recieve counseling once they are legal adults. If there is concern for a genetic condition and the child is still a minor, then it is ethical to test a child for a genetic condition.

What these people are doing, having children of previous customers tested, is HIGHLY unethical. What is the bottom line for this company? Is it power? Is it money? Is it fame?

Steve Murphy MD said...

@ anonymous Dow,
Now imagine what 23andMe would do if they were a publically traded company and under even more pressure from stockholders/investors!!!!!

They might react like deCode did!

-Steve

Steve Murphy MD said...

@ anonymous research,

I am scared that in order to make investors happy they have jumped off the deep end with floaties!!

-Steve

Anonymous said...

Quote: "Dude, you're more volatile than the Dow."

Wrong. He is point out major flaws from other genetic testing companies. His best interest is in the patients. He puts the patients first, not profits or fame.

Daniel said...

Wow... just wow. I stand in awe of your ability to work up a serious mouth-frothing anger, Steve.

It's a little unclear from your post, so I want to point out to readers that I don't agree with Steve that it's unethical for 23andMe to allow testing of children. I laid out some of my reasoning in my post.

Anonymous said...

Daniel,

You may benefit with some time spent reading the literature for testing of minors. You may have a different view point when you are done reading the literature.

I just found out an hour ago that I have an aunt that was diagnosed with amyotropic lateral sclerosis. I had one aunt die a few years ago from this same disease and my grandma from my dad's side was suspected of dying from amyotrophic lateral sclerosis as well (but I disagreed with the doctors view on that). Both of my aunts and grandma were on my dad's side.

Should I test myself for the same condition? Do I really want to know if I have a gene mutation that could lead to to developing amyotrophic lateral sclerosis as well? What about my children and the children from my brothers and my other uncles from my dad's side. Should those children should be tested as well?

Testing genetic material so you can basically put a child to sleep when traveling by plane is bull crap. Real genetic testing, not this genetic trait crap, is to help people with real serious concerns about real serious genetic diseases. This commercializing of genetic testing is pathetic and will kill the field of personalized medicine if they don't stop it....do it the legal, ethical, and right way.

Take that to the wood shed.