Ronald Bailey | June 27, 2008
California public health bureaucrats think that you are too stupid to handle your own genetic information. So they have sent cease and desist letters to 13 consumer genetic testing firms telling them that they can't do business with California residents. New York bureaucrats have been doing the same thing. The new consumer genetic screening companies argue that they are not making medical diagnoses, but offering a service which educates consumers about various genetic risks they may have.

Princeton biologist Lee Silver, who had his genes scanned by one of the companies - 23andMe - being told to cease and desist, explains:
According to the California health department, it’s dangerous for me to see this information about myself without a doctor's permission. Does this make any sense at all? I can tell you that anyone willing to spend $1,000 for a file containing 500,000 lines with a bunch of letters and numbers [like those shown in his blog post] knows more about the genetic meanings of those characters than 99.9% of the doctors in this country....
This is a boutique product being sold to individuals who are simply curious about their heritage and their predispositions to certain behaviors and other traits. As 23andMe makes perfectly clear, “This service is for research and educational use only.” If you are concerned about certain results and you bring the information to your doctor to consider some sort of treatment, what’s wrong with that? And if you decide to treat yourself . . . well that’s exactly what millions of people do every day with dietary supplements after receiving bogus diagnoses on radio and TV, and no one stops them.
But the thing that really angers me about Karen Nickel and her colleagues in California is that she really doesn’t understand what she is trying to regulate when she questions the “accuracy” of the product. The DNA information that the company gives you is more than 99.9% accurate (I’ve assessed it myself). Some of these DNA variants can provide probabilistic assessments of your risk to certain diseases (which you can look up on the internet). Those assessments -- whatever they are -- are a hell of lot more “accurate” than the stuff routinely passed through the mass media. I think that the real reason Karen is so scared-to-death is that the new era of private genetic tests will almost certainly destroy a worldview (that she and others cling to) in which genes don’t matter at all. And so like the Pope in Galileo’s time, she wants to stop the telescopes from peering into our own bodies, at our own molecules.
I also had 23andMe scan my genes for an upcoming article for reason in which I will reveal all of my known genetic flaws and explain why those revelations don't matter. The nifty consumer interface supplied by 23andMe is actually very easy to understand and use. Among other things, the biomedical literature suggests that I have some genetic variations that confer slightly lower risk than average of esophageal cancer and heart attack and moderately higher risk of atrial fibrillation. In addition, the family legend about Cherokee ancestors is bogus, though the mitochondrial DNA I received from my mother apparently descended from a woman who entered Europe about 40,000 years ago (and perhaps helped kill off the Neanderthals).
Silver is correct when he writes:
And if you really are scared to death by the results of such a test, no one is forcing you to do it!
In the meantime, some of the consumer genomics companies are pushing back. If it turns out that ancient 20th century laws actually empower regulators to prevent consumer access to this information, California and New York legislators should immediately vote to overturn these regulations.
Help Reason celebrate its next 40 years. Donate Now!
Try Reason's award-winning print edition today! Your first issue is FREE if you are not completely satisfied.
Sounds to me like thses folks might have a wee bit too much tim
on their hands.
JT
http://www.Ultimate-Anonymity.com
If it turns out that ancient 20th century laws actually empower regulators to prevent consumer access to this information, California and New York legislators should immediately vote to overturn these regulations.
Prefatory clauses are a popular subject this week, and I think that
one is unnecessary.
Silver make a good point, right up until the part about the
health official obviously being a blank-slater who hates genetics
because of some ideology.
Silver is obviously very attached to a philosophical framework
about genetics and their influence on us, and there's nothing wrong
with that, but it's a rookie mistake to assume that your political
opponents' are your own mirror image.
Barry Goldwater wasn't on the other side of the Civil Rights act
from the desegregationists because he was a segregationist, but
because of a completely different set of beliefs having to do with
property rights and federalism.
Karen Nickel "and her colleagues" are almost certainly not on the
other side of this issue from Lee Silver because of a political
belief about genetic influence, but because of a completely
different set of beliefs about nanny-state stuff and proper medical
practice.
But the thing that really angers me about Karen Nickel and
her colleagues in California is that she really doesn't understand
what she is trying to regulate
This is extremely common.
Legislators don't understand this, the economy, or the Internet
(although, I hear John McCain is aware that it exists), yet they
feel they are perfectly capable of effectively "managing" these
things.
I also had 23andMe scan my genes for an upcoming article for
reason in which I will reveal all of my known genetic flaws and
explain why that doesn't matter.
Ewww! Ick! TMI. No one wants to see your DNA Ron. Now if you could
persuade Ms Howley to get tested and publish her results. I'm sure
we'd all like the opportunity to look for the 'hot, smart, freedom
loving' gene.
"In addition, the family legend about Cherokee ancestors is
bogus"
Have you ever noticed that every white person you talk to says they
have some native american ancestry, when in truth more whites have
black or hispanic ancestry in them.
Native americans were reviled as compared to other races during the
formation of this nation.
I am white and heard that crap as I grew up as did my white wife.
Now after she has been doing genealogy for about 5 years we know
better.
Warren,
'hot, smart, freedom loving' gene
Already got that...
ACUGUUUAGGCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGCUAU
AGCUAGAUUUAGCGGAUCGUACGUGGGCGGCUUAGUCGUGAUCGUA
GCUGAUCGAUCGUGGGCUUGAUCGAUCGAUCCUAUCGUAGGCUUAG
CGCGUAUUAGCUUAGGGCUUAGGCUAUCGUAGGCUUAGCGCGUAUU
AGCUUAGGGCUAUAGCUAGAUUUAGCGGAUCGUACGUGGGCGGCUU
AGUCGUGAUCGUAGCUGAUCGAUCGUGGGCUUGAUCUGGGCUUGAU
CGAUCGAUCCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGCUUAG
GCUAUCGUAGGCUUAGCGCGUAUUAGCUUAUGAUCGAUCGUGGGCU
UGAUCGAUCGAUCCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGC
UUAGGCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGCUAUAGCUA
GAUUUAGCGGAUCGUACGUGGGCGGCUUAGUCGUGAUCGUAGCUGA
Although, might have missed an "A" somewhere in there. My memory's
a bit rusty these days.
Why would the busybodies in California and New York want to prohibit people from getting information? I'd like to see how many of these public heath bureaucrats are =on board with mandatory dietary information being provided by food sellers. Just like DNA information, the average Californian is far too ignorant to understand the info required by law on a box of Froot Loops.
Warren, get your tongue off the floor.
and perhaps helped kill off the Neanderthals
Uh, we didn't kill off the Neanderthals, Ron. We merged with
them.
/ absorption mode off
You could link this post with one of the many gun-control posts. I've heard from many a control advocate that increased gun ownership will lead to more suicides. So a gun owner finds out he's predisposed to Lou Gehrig's Disease...see where this is headed?
ACUGUUUAGGCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGCUAU
AGCUAGAUUUAGCGGAUCGUACGUGGGCGGCUUAGUCGUGAUCGUA
GCUGAUCGAUCGUGGGCUUGAUCGAUCGAUCCUAUCGUAGGCUUAG
CGCGUAUUAGCUUAGGGCUUAGGCUAUCGUAGGCUUAGCGCGUAUU
AGCUUAGGGCUAUAGCUAGAUUUAGCGGAUCGUACGUGGGCGGCUU
AGUCGUGAUCGUAGCUGAUCGAUCGUGGGCUUGAUCUGGGCUUGAU
CGAUCGAUCCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGCUUAG
GCUAUCGUAGGCUUAGCGCGUAUUAGCUUAUGAUCGAUCGUGGGCU
UGAUCGAUCGAUCCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGC
UUAGGCUAUCGUAGGCUUAGCGCGUAUUAGCUUAGGGCUAUAGCUA
GAUUUAGCGGAUCGUACGUGGGCGGCUUAGUCGUGAUCGUAGCUGA
Your genes are coded in RNA?
Reinmoose said:
This is extremely common.
I don't think that's the case here. I side with joe. Their
worldview is that anything related to medicine must be filtered
through the eyes of a "qualified" physician. Direct contact with
the patient is a no-no, because of the standing assumption that the
patient can't be trusted with their own help.
This is just another example of the government trying to protect us
from ourselves and calling it "public health". Absurd.
I can't be blamed for the fact you two are poor and have to use shoddy, out-dated DNA. Get a real job and join the R(NA)evolution, baby.
So, I need to stay away from California and New York if I want
to keep my genes and guns?
I might be able to manage that.
How about some pictures of Ms Howley in tight jeans as a warmup for her hot genes?
Oh i see, MP. So it's not that she doesn't understand it, it's that she thinks she knows that there might be negative consequences to this unless it's called for by a doctor... I'm not sure I see a huge difference, but I'll agree to the difference.
the average Californian is far too ignorant to understand
the info required by law on a box of Froot Loops.
Thanks to our CA public schools, I can't even read "Froot Loops" --
but am fully capable of filing a lawsuit against General
Mills on the grounds the name is offensive.
Episiarch: Interesting possibility
from PNAS:
At the center of the debate on the emergence of modern humans and
their spread throughout the globe is the question of whether
archaic Homo lineages contributed to the modern human gene pool,
and more importantly, whether such contributions impacted the
evolutionary adaptation of our species. A major obstacle to
answering this question is that low levels of admixture with
archaic lineages are not expected to leave extensive traces in the
modern human gene pool because of genetic drift. Loci that have
undergone strong positive selection, however, offer a unique
opportunity to identify low-level admixture with archaic lineages,
provided that the introgressed archaic allele has risen to high
frequency under positive selection. The gene microcephalin (MCPH1)
regulates brain size during development and has experienced
positive selection in the lineage leading to Homo sapiens. Within
modern humans, a group of closely related haplotypes at this locus,
known as haplogroup D, rose from a single copy {approx}37,000 years
ago and swept to exceptionally high frequency ({approx}70%
worldwide today) because of positive selection. Here, we examine
the origin of haplogroup D. By using the interhaplogroup divergence
test, we show that haplogroup D likely originated from a lineage
separated from modern humans {approx}1.1 million years ago and
introgressed into humans by {approx}37,000 years ago. This finding
supports the possibility of admixture between modern humans and
archaic Homo populations (Neanderthals being one possibility).
Furthermore, it buttresses the important notion that, through such
adminture, our species has benefited evolutionarily by gaining new
advantageous alleles. The interhaplogroup divergence test developed
here may be broadly applicable to the detection of introgression at
other loci in the human genome or in genomes of other species.
Nice
trilogy of novels for Neanderthal fans.
Parallel Earth where Homo Sapien died out instead. The
Neanderthal world is a bit socialist paradise but they achieved it
through fairly realistic means and fairly consistently with current
understanding of how hunter/gathers societies worked.
What benefit to society comes from thinking you have Cherokee blood? The myth definately ran through my family, until finally my siblings and I figured out it was probably bullshit. Should I worry for my Dad's 17 grandkids that aren't being conned?
Keep your laws off my body!
I'm guessing that's something Ms. Nickel and Co. can get
behind.
James Ard,
Unless you can prove you have enough Injun background to get some
"free" land (I don't) or you are trying to get some other
government handout that requires ancient Asian immigrant roots, or
you are trying to use it to get tenure for some total crap
university instructor seat, then it really does not matter.
BTW, everybody born on the American land mass is a Native
American.
Nice trilogy of novels for Neanderthal fans.
I liked those, but not as much as some of his earlier stuff.
James Ard,
Having worked with hundreds of genealogists, the vast majority with
this belief, I have a nice answer and a mean answer.
Nice: It is a way to feel as if you have a connection to
state/country that is deeper than other people, due to a unbroken
genetic heritage.It's a superiority through seniority thing.
Mean: Victimology has become such a powerful force, claiming
heritage to a oppressed group is a way to deal with white
guilt.
Have you ever noticed that every white person you talk to
says they have some native american ancestry, when in truth more
whites have black or hispanic ancestry in them.
Meanwhile, American Indian ancestry is much more common among black
people in America, and yet you hear much less bragging about
it.
Re: The Cherokee blood "myth"
This story also runs in my family. However, extensive geneological
research has done nothing to disprove it and has provided some
circumstantial evidence towards accepting it. A genetic test would
be nice to answer it one way or another, but its not worth $999 to
me.
My grandfather (henryc) is supposedly the grandson of a earlier c
who "married" a cherokee woman. I refer to my g-g-grandfather as
just c because we have no clear what his name was. I know his
father's name, I know grandfather's name, I know his son's name. No
clue on his. Even a family bible from that time frame makes no
reference to him. He was clearly the black sheep of the family.
Also, his 2nd? wife (stepmother of my great grandfather) is
included.
My personal theory (which has some evidence to back it up) - dude
marries/knocks up indian chick. Their kid is my great grandfather.
Cherokee chick dies/goes away/whatever and dude marries nice, local
white chick. They have a few kids and then he croaks it. Nice chick
raises kids, including my great grandfather. Family treats her as
part of family and tries to forget their son ever existed.
Theory #2 - its all bullshit.
This is just another example of the government trying to
protect us from ourselves and calling it "public health".
Absurd.
Because we're too stupid to be trusted with that information. We
might do something irresposible if we have too much
information.
joe,
Meanwhile, American Indian ancestry is much more common among
black people in America, and yet you hear much less bragging about
it.
Hypothesis: Blacks are more racist than whites.
What benefit to society comes from thinking you have
Cherokee blood?
I don't know about benefits to society, but virtually every time
I've heard some white guy claim he has American Indian blood, it's
been in the context of, "You don't wanna mess with me bro, I'm
one-quarter Cherokee, so when I get mad, I can't be held
responsible for what happens", or some equally ridiculous
bullshit.
On the other hand, claiming to have some Cherokee blood sounds a
little more romantic than "My ancestors used to shoot Indians on
sight".
If you lived in Texas in 1900, you pretty much had to go to
Oklahoma or New Mexico* if you wanted to sleep with a Native
American.
Okay, so Oklahoma and New Mexico weren't actual states in 1900, but
you know what I mean...
Where do these legislators stand on commercial/private urine
testing?
You really need to be wearing boots for standing on
commercial/private urine, like that guy on "Dirty Jobs".
California public health bureaucrats think that you are too
stupid to handle your own genetic information. So they have sent
cease and desist letters to 13 consumer genetic testing firms
telling them that they can't do business with California
residents.
I'll bet dollars to donuts that it is perfectly legal to send
personlized horoscopes to California residents. Not that I want to
prohibit people from consulting the stars before they make major
life decisions, but doesn't allowing that while prohibiting
personalized genetic analysis seem monumentally stupid?
robc:
Hypothesis: White people try desperately to stand out from each
other, and right now being "ethnic" is en vogue.
Hypothesis: If I am 1/16 (or more) Mohegan or Pequot, I get me my share of that dirty, dirty casino money. Where's my genetic test?
Reinmoose,
I could buy that hypothesis except it doesnt explain my
grandfather, who has been dead for 21 years and was never en vogue
before that, claiming it.
And I second what Mr. DNA said above. I can't tell you how many times i've heard people say stuff like "I'm 1/4 jewish so I'm good with money"
I am 1/2 Irish and 1/2 ???
I can live with that. If I got the analysis done I might find out
something upsetting. Imagine the horror of discovering that you are
part [involuntary shudder] Belgian.
And I second what Mr. DNA said above. I can't tell you how many times i've heard people say stuff like "I'm 1/4 jewish so I'm good with money"
I'm 1/4 Jewish, so I'm good with money. I'm 1/4 Chinese, so I'm
good with math. The remaining 2/3 of me isn't good at
anything...
How can you tell a male chromosome from a female chromosome? You
pull their jeans down!
HA HA HA HA HA HA HA HAAAAAAAAAAAAAAAAAA!
...Oops! Sorry! For a moment there I thought I was back in fourth
grade biology.
1/2 Irish, 1/2 German.
I might invade your country, but it's really just so I can grow
potatoes there.
Irish last name, narrowly avoided being named Patrick. The best
thing my mother ever did for me.
1/2 Irish, 1/2 German
Another dirty mick.
I might invade your country, but it's really just so I can grow
potatoes there.
German-Italian here. Axis all the way, baby!
Irish last name, narrowly avoided being named
Patrick.
Baptised on St Paddy's no less.
Baptised on St Paddy's no less.
Like Michelob Ultra and soccer, I don't look down on the Patricks,
it's just not for me.
You're not Patrick O'Keeffe, my favoritest bartender in the world,
are you?
1/2 Irish, 1/2 German.
So when you meet an English guy, do you immediately punch him in
the face, but then shortly after that surrender and give him all
your stuff?
Just kidding, I have the same Anglophobic gene mixture myself.
but because of a completely different set of beliefs about
nanny-state stuff and proper medical practice.
Joe
Explain those different beliefs, the logic behind them, and give us
one good reason why we shouldn't utterly ridicule any regulatory
attempt to keep my own genetic information from my own eyes.
In fact, joe, this reminds me of another law that exists in
California:
California Code (BUSINESS AND PROFESSIONS CODE
SECTION 2541.2)
(d) If a patient places an order with a contact lens seller other than a physician and surgeon, an optometrist, or a registered dispensing optician, the prescriber or his or her authorized agent shall, upon request of the contact lens seller and in the absence of the actual prescription, attempt to promptly confirm the information contained in the prescription through direct communication with the
contact lens seller.
(h) A prescriber shall not condition the availability of an eye
examination, a contact lens fitting, or the release of a contact lens prescription on a requirement that the patient agree to purchase contact lenses from that prescriber. A registered dispensing optician shall not condition the availability of a contact lens fitting on a requirement that the patient agrees to purchase contact lenses from that registered dispensing optician.
Fluffy,
Except for my hyper-Irish last name and my prodigious ability to
drink, I'm just good old fashioned mutt white.
At least my family was too poor to ever own slaves, something my
plantation-descended wife can't say.
"archaic Homo populations "
not that there's anything wrong with that.
joe, I caught a show on pbs a while back that did genetic tests on
some popular black people. Maya Angelou, Dave Chapelle Whoopi
Goldberg and some others iirc. They all had stories about Cherokee
blood in the family. All were wrong. The geneticist said according
to their study, only a very very small part of the black population
has indian mixed in. Caucasian was much more prevalent.
Feh. Only girly-men claim Cherokee heritage. Real men are part
Apache.
Actually, I'm probably part-Navajo or Pueblo (based on where my
paternal grandparents came from in New Mexico), but there were
plenty of Apache around there, too, and Apache sounds better than
Pueblo.
You're not Patrick O'Keeffe, my favoritest bartender in the
world, are you?
Afraid not.
Last name is a version of McWhatever which is totally
unpronouncable to 99% of the population on first glance.
Christ, it's like a drunk tank in here: full of
micks.
As you may have heard, God created whiskey to prevent the Irish
from ruling the world.
There are only two kinds of people in the world.
The Irish and those that wish they were Irish.
Last name is a version of McWhatever which is totally unpronouncable to 99% of the population on first glance.
McGehee? That's one I've had trouble with.
I don't care what dna is in my genes. If any one of my ancestors was different I wouldn't be me.
Paul, you'd probably want to ask that question to somebody who agrees with the position.
There are only two kinds of people in the world.
The Irish and those that wish they were Irish.
There's a third kind: humans.
There's a third kind: humans.
Epi, you missed an opportunity to link to some 19th Century
editorial cartoon showing the Irish as simians, like those
negroes.
Epi, SugarFree
You are practicing "hate commenting" which discriminates on the
basis of race, religion, national origin, inflicting significant
emotional distress on me and others. You will be hearing from my
Jew lawyers.
That anti-Italian one is great.
Jsub, it is not possible to commit a "hate comment" against people
everyone already hates.
Jsub, it is not possible to commit a "hate comment" against
people everyone already hates.
Oh really?
(NSFW)
it is not possible to commit a "hate comment" against people
everyone already hates.
It is not possible to commit a hate crime against the irish because
hate crimes must be directed at humans.
When my Islamic friends encounter bigotry and intolerance they
correctly chalk it up to ignorance and fear.
We Irish correcly ascribe it to jealousy.
♪ Oh Lord it's hard to be humble
when you're perfect in every way.
I can't wait to look in the mirror
cause I get better looking each day ♪
As a medical student, I am appalled that public health no longer
means "prevent epidemics," and has come to include "peer into each
individual's health decisions, even when they have no bearing on
other people." Public health should have no role in non-infectious
diseases. These people smear doctors' good names, because now lots
of people think we're all public health nannies.
If you come to me and say you want to eat more healthfully or stop
smoking, I will try to use the best evidence-based tx to help you.
I will never "help you stop" by legislating bans on products that I
deem unhealthy.
Because we're too stupid to be trusted with that information. We might do something irresposible if we have too much information.
You seem like the type to practice gene therapy in your basement. Not to correct a problem, but to make yourself a prototype of a new race of atomic supermen.
I agree with Joe's comment "Silver is obviously very attached to
a philosophical framework about genetics and their influence on us,
and there's nothing wrong with that, but it's a rookie mistake to
assume that your political opponents' are your own mirror
image."
I'm a California resident, and I count myself fortunate that I
obtained tests from deCODEme and 23andMe before the current
brouhaha erupted. However, I doubt that companies like 23andMe and
deCODEme were the initial target. The California investigation was
sparked by consumer complaints, and I would bet those were directed
at the nutrigenetic segment (which did not exactly fare well when
subjected to a controlled experiment).
That's not to argue that existing laws (which were designed for
laboratories performing blood tests, pathology exams, etc.) are
correct -- merely that Karen Nickel's motivations can't be ascribed
to her stance on the role of genetics. She's applying the law to
all companies equally. Here's the list:
http://blog.wired.com/wiredscience/2008/06/california-reve.html
Ron, I'm reading between the lines, but the family legend about
Cherokee ancestry is not necessarily bogus. Your mitochondrial DNA
comes from your straight maternal line, and you could still have
Cherokee ancestry from a different direction. If you're basing your
conclusion on comparisons of your autosomal DNA to various
populations, any Cherokee ancestry might be so long ago that you
haven't inherited any DNA from that side.
One thing I enjoy about these new genomic scans is that they allow
us to become "citizen scientists" and participate directly in new
discoveries. One example: the Y chromosome follows the straight
paternal line, which very conveniently happens to be the surname
line in many cultures. Genetic genealogists who have taken tests at
23andMe and deCODEme have already revised the branching structure
of the Y tree. I invite any readers who have obtained results to
participate in this effort, described in my article "SNPs on Chips"
in the Journal of Genetic Genealogy:
http://www.jogg.info/41/Turner.pdf
Ann Turner, M.D.
co-author (with Megan Smolenyak) of "Trace Your Roots with DNA"
Because we're too stupid to be trusted with that information. We might do something irresposible if we have too much information.
You seem like the type to practice gene therapy in your basement. Not to correct a problem, but to make yourself a prototype of a new race of atomic supermen.
Yeah, So?
I had my own peptide done as well. It read:
HANKAHANKOBURNINLOVE
I don't think government busybodies should be allowed to take that
away from me.
Yeah, So?
Look, according to the tests, you carry several genetic traits common among supervillains. This, combined with your meddling in superscience is troubling to official law enforcement channels.
Site comments/questions:
Media Inquiries and Reprint Permissions:
(310) 367-6109
Editorial & Production Offices:
3415 S. Sepulveda Blvd.
Suite 400
Los Angeles, CA 90034
(310) 391-2245