God and Fluffy Bunnies Come to the NIH

Photo by TheTim

Oh goody, look who our most science-y President Barack Obama has nominated to head the National Institutes of Health:

WASHINGTON – President Barack Obama is choosing an influential scientist who helped unravel the human genetic code — and is known for finding common ground between belief in God and science — to head the National Institutes of Health.

Obama called Dr. Francis Collins "one of the top scientists in the world" in announcing his nomination Wednesday.

"His groundbreaking work has changed the very ways we consider our health and examine disease," Obama said.

...

The folksy Collins led the Human Genome Project that, along with a competing private company, mapped the genetic code — or, as he famously called it, "the book of human life."

"It is humbling for me, and awe-inspiring, to realize that we have caught the first glimpse of our own instruction book, previously known only to God," he said at a 2000 White House ceremony marking release of the genome's first draft.

...

NIH is familiar turf: Collins spent 15 years as the NIH's chief of genome research, before stepping down last year to, among other things, work with Obama's campaign. He also helped found the BioLogos Foundation, a Web site formed by a group of scientists who say they want to bridge gaps between science and religion

You know, *that* BioLogos Foundation:

Francis Collins and Karl Giberson, with funding from the Templeton Foundation (who else?), have put together a whole website full of fluffy bunnies and pious weasels to reconcile science and faith.

NIH Update II

When last we left the saga of the NIH posting incorrect medical information about the progestin-only emergency contraceptive pill (ECP):

I had emailed Dr. Marchiano, the last one to review/update the information according to MedlinePlus. [Still no reply from him.]

I'd contacted the NIH. [Received a prompt reply from C. Marks, NIH Librarian, National Library of Medicine, letting me know that 1) the info is provided by A.D.A.M., and 2) my email will be forwarded to the publisher.]

I had also emailed Dr. Trussell, for an expert second opinion, and to bring the situation to his attention. [Received an uber prompt reply (I must say, I was impressed) verifying the accuracy of my data (well, actually, his data.]

Last, but not least, I'd contacted A.D.A.M., using their site Contact form. [Received a fairly prompt call from C. Tenorio, an educational sales rep. He promised to forward the info to Kelly (couldn't remember her last name), a content editor.]

As soon as I hear from A.D.A.M.'s editor I'll let you know.

In the interim, I can't help but notice that the NIH site continues to display incorrect information about the emergency contraception pill. I wish I was even marginally skilled in the art of PR, because if this type of news makes the wires, I most certainly think a press release about the government's incompetence/ignorance when it comes to disseminating health information would be newsworthy.

On a related note, a reader wonders Where did the 10 times risk statement come from? I've asked myself the same question and I must say, I don't know. It certainly looks like it came from a study, but, despite repeated literature searches, I haven't been able to find even one source for the statement.

I do have a theory, but I must caution you that the underlying assumption--that anyone with any medical knowledge would make such a basic mistake--is quite far-fetched. Here it goes. The prescribing info for Plan B contains this statement (.pdf) [emphasis mine]:

Ectopic pregnancies account for approximately 2% of reported pregnancies (19.7 per 1,000 reported pregnancies). Up to 10% of pregnancies reported in clinical studies of routine use of progestin-only contraceptives are ectopic. A history of ectopic pregnancy need not be considered a contraindication to use of this emergency contraceptive method. Health providers, however, should be alert to the possibility of an ectopic pregnancy in women who become pregnant or complain of lower abdominal pain after taking Plan B®.

Now, clearly, the statement is about ectopic pregnancies in users of the regular progestin-only birth control pill (different drug, different regimen, etc.; tells us nothing about ectopic risk in users of the progestin-only emergency contraception pill). However, it is possible for someone to misinterpret the information and mistakenly assume it refers to Plan B. I don't know; I told you my theory was pretty out there. All I can say is that, on the off chance that I'm right, someone who makes this kind of mistake has no business providing educational content to frogs, let alone the NIH.

To be continued.

The NIH Responds

Reply from the U.S. National Library of Medicine (NLM):


Thank you for your message about the Medical Encyclopedia on MedlinePlus.
It is provided by A.D.A.M..
We will forward the information you provided to the publisher.



Thank you for your interest in NLM products and services.

C. Marks
NIH Contractor Librarian
Customer Service
National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
custserv@nlm.nih.gov
1-888-346-3656 (within US)
301-594-5983 (international)

Points to the NIH for the prompt reply. Possible demerit for outsourcing its job to an outside company. I mean, the NIH has direct access to the best and the brightest, the experts, the lead scientists in the field. Wasn't it possible to get the information directly from them, instead of having to hire an outside company, which then has to go out and hire its own experts to verify the information (more or less successfully)? Ugh, I hate bureaucracy.

OK, off to contact the A.D.A.M. people.

(Background on the story here.)

NIH Update

The story about the NIH posting incorrect information about the emergency contraception pill is here.

I emailed the person responsible for last updating the site, Dr. Dominic Marchiano, as well as the Reference and Customer Service Section at the National Library of Medicine (custserv@nlm.nih.gov). So far, no reply. I've also emailed Dr. Trussell to let him know about this problem. I'll update once I have something.

One more thing. Someone please do a screen capture of the original paragraph (I forgot how to do that) just to be on the safe side.

Where I Catch The NIH With Its Pantaloons Down

Is the NIH posting incorrect information about the emergency contraception pill (ECP) on purpose? You be the judge.

From the entry on ectopic pregnancy at MedlinePlus, a service of the U.S. National Library of Medicine and the National Institutes of Health (NIH):

The "morning after pill" is associated with a 10-fold increase in risk of this condition [ectopic pregnancy] when its use fails to prevent pregnancy.

Well, knock me over with a feather and call me Fifi; a 10-fold increase you say?

The way I see it, there are 3 possible explanations for this statement:

1) It's a typo.

2) The information is accurate.

3) The government is deliberately making stuff up.

I haven't yet contacted the site operator, so the typo explanation remains a possibility.

It's also possible that, while I slept last night, the medical consensus has changed and ECP use is, indeed, associated with a 10-fold increase in risk of ectopic pregnancy. This one is easily verifiable; all we need to do is to look at the relevant literature.

Trussell does the work for us, and reviews the available studies (click on the PDF link):

[W]e identified five clinical trials of levonorgestrel-only ECPs.3-7 As shown in Table 1, these trials reported a total of 97 intrauterine pregnancies and one EP [ectopic pregnancy]. The proportion of pregnancies that were ectopic was thus 1.02% (95% exact CI 0.02%-5.55%). This proportion is consistent with the reported national rate of 12.4 and 19.7 per 1000 pregnancies in England and Wales and in the USA, respectively.8,9 Therefore, these trials provide no evidence to suggest that progestin-only ECPs increase the chance that a pregnancy will be ectopic. Moreover, because ECPs are so effective at preventing pregnancy in general, they certainly reduce a woman's absolute risk of EP.

Got that? There's no evidence to suggest that progestin-only ECPs increase the chance that a pregnancy will be ectopic. And do you [I'm looking at you, NIH] also get that when studies show no evidence of risk, telling your readers that there's a 10-fold increase in risk is irresponsible?

Which brings me to the third explanation. Given that the information about the risks of using the ECP is well known and widely available, coupled with the government's repeated refusals to base ECP-related decisions on science, I am inclined to think that the NIH is deliberately misinforming the public about the ECP.

And speaking of the NIH deliberately posting inaccurate information, referring to the ECP as the "morning after pill" is incorrect. Yes, the term is in common use and, as such, should be mentioned, in context, next to the actual drug name. But using it as the sole term is not acceptable because it can cause patients to use the ECP incorrectly. [Recall that the effectiveness of ECPs depends on timing of use.]

If you're interested in [accurate] information on emergency contraception (EC), here's a very informative review article on EC as a coast-effective approach to preventing unintended pregnancies (.pdf).

Update:

As per a commenter's suggestion I did try to email Dr. Dominic Marchiano, but it didn't go through. I found a contact page for his office; I'll try to call tomorrow to see if I can get a valid email.

Another Update:

I emailed Dr. Marchiano. He's out of the office till Monday. I'll update if he responds.