Life as an Extreme Sport

The Centers for Disease Control & Hypocrisy?

February 10, 2016 Kelly Bioethics, Politics

Last week, the Centers for Disease Control and Prevention released a highly contentuous new Vital Signs post on women, pregnancy, and alcohol. The main message was, essentially “don’t drink, ever, if you could possibly be using your uterus to store more than endometrial tissue, fibroids, or intrauterine devices.”

Oh, nice try CDC. I see they finally changed their graphic, a week after the uproar. Unfortunately for them, the internet is forever. This is the original, infuriating, graphic.

The impetus for the post appears to be the fact that roughly 52% of pregnancies in America are unplanned, and many women are pregnant for 4 to 6 weeks before they realize they’re pregnant; in that time, there’s the possibility of consuming alcohol.

Now, while studies don’t support the idea that mild drinking while pregnant will harm a fetus, the CDC (and many commentators) have latched onto this rather ludicrous THE RISK IS REAL DON’T TAKE ANY RISK approach for alcohol and pregnany, even going so far as to say it’s not worth risking a single IQ point.1 Let’s say we accept this fearmongering approach, ignoring the lack of scientific support for the assertions, ignoring the victim-blaming nature of the infographic,2 even ignoring the fact that the CDC conveniently forgot not only a man’s role in conception but the damage drinking can do to sperm and how that can affect fetal development.3 Any risk is bad. Wrap pregnant women up in cotton, leave them in a padded room, and don’t let them do anything in case they happen to be in the process of 9.5-odd months of gestation.

Really don’t let them smoke, right? I mean, the risk is real! Smoking while pregnant can cause fetal death, low birth weight, preterm birth, affect the integrity and function of the placenta, is a risk factor for sudden infant death syndrome—oh my gosh! This list is just as bad, if not worse, than the risks of pregnancy and drinking for fetal alcohol spectrum disorders. Certainly with the release of new data on the risks of smoking and pregnancy—completely separate from the other known risks that smoking has on health, such as cancer, emphysema, chronic obstructive pulmonary disease, and death—the CDC has created an equally dire infographic and message saying that the risk is real, so quit smoking, why take the risk?

Yeah, nope. WaitWhatYoureKidding

We didn’t even get an infographic.

Instead, we got a very sensible, calm, factual question-and-answer style statement from the CDC explaining how smoking can harm a pregnancy and baby, the number of women who smoke while pregnant, benefits of quitting, effects of second-hand smoke, and further resouces, with various facts hyperlinked within the article itself.

It’s almost an ideal example of how to present facts about a risk in order to allow women to do an analysis of the situation based on their own agency and autonomy.

The CDC did everything right this week with their publicization of new information about smoking and pregnancy data and risks. As Sarah Richardson and Rene Almeling noted in the Boston Globe on Monday, “[w]omen are constantly bombarded with advice about what to eat and drink and how to behave during pregnancy,” and rather than add to the growing list of simplistic injunctions of an “omg if you do that you will kill the baby” variety, the CDC provided pregnant people with credible information about how to weigh reproductive risks.

And yet. And yet. In the light of last week’s NO RISK IS ACCEPTABLE message regarding women and pregnancy, it’s a stark difference in approach and messaging, and both underscores the hypocrisy of their “ABSTAIN OR ELSE” message regarding alcohol while further damaging their credibility as a trusted source of health information and regulation.

Richardson & Almeling on the CDC’s Pre-pregnancy & FASD “Guidelines”

February 9, 2016 Kelly Bioethics

Although it’s not the first thing you learn in ethics, the idea that you’re not going to be popular probably should be; it really does make life a lot easier. After all, a large part of the job of the ethicist is to be unpopular:

no, you can’t modify that flu virus so that it’s more contagious and more deadly than the lovechild of smallpox and the Spanish flu;
yes, it’s okay that this person wants to die;
no, you can’t just put fecael microbes in open brain wounds;
sorry, no, the science doesn’t support your claim;
who will the car hit;
you fired everyone NOW;
does the benefit justify risk; and so on.

You get the idea.

So I wasn’t terribly surprised to face the typical backlash when I noted just how unscientific, shaming, stigmatizing, and plain wrong the CDC’s recent “treat every woman4 as pre-pregnant”2 declaration that no person with a uterus should drink3 unless 100% certain there’s no uterus-crasher in residence was—but it’s always nice when folks who have the respected PhD after their name (and are at Ivy League universities) join the chorus.

I recommend reading Richardson and Almeling’s op-ed in it’s entirety, but here are the choice pieces:

The CDC’s overly broad advisory damages its credibility as a source of clear, balanced advice about health risks. A risk may be “real,” but it may not be large or well substantiated. The CDC claims that “drinking any alcohol at any stage of pregnancy can cause a range of disabilities” for a woman’s child.” Yet a balanced review of the scientific evidence does not support such unequivocal claims. In fact, medical research suggests just the opposite. For example, the Danish National Birth Cohort Lifestyle During Pregnancy Study demonstrated that moderate drinking during pregnancy carries no long-term risks.

First, the CDC needs to be clear that science on the risk of alcohol during pregnancy is far from settled. Any advice about reproduction should respect the autonomy and intelligence of women by presenting evidence in its full context. Public health officials should provide perspective about the size of the effects relative to other common risk factors. And they should be straightforward in describing the evidentiary base for health advisories.

The CDC can regain credibility in this realm by providing information to women and men that details the relative risks of various behaviors, as well as the state of scientific debate regarding the evidence supporting these assessments

The CDC’s mission is to identify and address clear and present dangers to the public health. As such, their credibility is literally a matter of life and death … Issuing guidelines with all the nuance of a sledgehammer only damages the public’s trust in federal health recommendations.

There are possible risks to drinking while pregnant, and women should be told what those risks are. But they’re not clear-cut, they’re not well-understood, and there’s no guarantee that abstaining from alcohol means a baby won’t be diagnosed with Fetal Alochol Spectrum Disorder; like many disorders, it’s a diagnosis of exclusion, and the criteria for diagnosis does not require confirmation of alcohol consumption during pregnancy (and in fact, at least one paper in Pediatrics suggests that if a woman has a child diagnosed with FASD and says she abstained during pregnancy, she must be lying about her drinking habit).

But there are a lot of risks to women while pregnant, and unless you’re advcating that women be padded in bubblewrap and never let outside of a padded room while pregnant (which in itself is probably a risk for something), then pregnancy, like life itself, is about balancing risks, benefits, and rewards. In order to make decisions in an accurate risk/benefit analysis, women first need to know what the science, not a sledgehammer of paternalistic unscientific fearmomgering.

An Ebolanoia Anniversary–Or, The Emperor’s [Lack of] Disclosures

October 6, 2015 Kelly Bioethics, BioScary

It’s the Ebolanioa anniversary! Over at Slate, Tara C. Smith takes us through a quick walk down memory lane, and the utterly outsized reactions and political theatre America went through a year ago: quarantines and threats and Daesh-licking doorknob villains, oh my.

Hulk-hits-Thor-after-defeating-alien One thing still sticks in my craw: the utterly ludicrous suggestion from respected epidemiologist Michael T. Osterholm that we were all just afraid to talk about Ebola becoming airborne, but it was a real threat. Even though multiple, well-respected virologists and Ebola experts immediately corrected Osterholm’s panic piece, the panic piece is what took life, with other news outlets repeating him word-for-word–and few people questioning why such a respected epidemiologist would even propose such an outlandish thing, let alone in the pages of a New York Times op-ed rather than in a respected, peer reviewed publication.

While it pains me to point this out, because Osterholm was quite complementary of my anthrax- and NSABB-related posts, someone has to play the fool and point out the emperor has no clothes. Or in this case, the emperor has a pretty glaring conflict of interest, neatly laid out for all to see if they just take a look:
CIDRAPOct62015

Do you see it?
CIDRAPOct62015-Highlighted

3M, a “leading underwriter” of CIDRAP, where Osterholm is (and has been) director, is also a leading manufacturer of N95 masks. The sort of mask used for personal protective equipment if you’re treating a patient with an airborne infectious disease. The sort of mask that is typically advocated by those who have more than a little paranoia when it comes to disease in general.4 The sort of mask all over this National Institute for Occupational Safety and Health website.

Look, I completely understand the need for funding journalism, and as a whole I really enjoy CIDRAP’s reporting.2 Having been in publishing and journalism for over a decade at this point, I understand the need for funding, and just about everyone knows I have no lost love for the University of Minnesotta in general. But when you accept funding from outside sources, you have to start thinking about how that funding influences what you think, support, advocate for and write about. We know that it doesn’t take much to subtly, subconsciously, or consciously influence opinions, and major funding from a source of masks that would block airborne Ebola? That’s a pretty big conflict of interest that should be disclosed in any “but what about mutations” panic discussions in the public sphere.3

Addendum
It’s been brought to my attention that Osterholm et al’s mBio opinion piece, which I didn’t directly refer to here but waved a whole bunch of shade at, was amended in April of this year to “address” perceptions of conflict of interest. Unfortunately for CIDRAP and Osterholm et al, this attempt at damage control is pretty piss-poor. Their objection to being called out on the 3M conflict of interest boils down to what we’ve heard in other situations: the money goes into a giant pot at the university and we don’t know what dollars from them affect us, and besides, it’s unrestricted and they have no say!

Well. Except that if, per CIDRAP’s donation page, only 2% of their funding comes from the University proper, and they know who gives what to such a specific degree that they can list The Benson Foundation as a principle underwriter and 3M as a leading underwriter, then you can’t really say that “it just all goes into a pot and we don’t know which particular dollars 3M touched.” Because what you do know is that if 3M hadn’t touched a significant chunk of the money in that pot, it wouldn’t be there.

You, as an individual, know if you have $30 or $100 in your wallet, and you definitely know if $70 of the $100 came from a particular place. Trying to claim that a business that requires their donated money to function has no operational knowledge of where the money comes from is insulting to basically everyone’s intelligence.

The mBio amendment also attempted to claim that since they don’t talk about respirators in the piece, certainly they can’t be relevant to a piece talking about fears of an airborne mutation. I leave this to the audience: Do you think respirators are relevant, at all, to protection from airborne disease, even if not directly mentioned in an opinion piece? Hmm.

Look, it’s a common misunderstanding that noting a conflict of interest is akin to admitting guilt or bribery or corruption. It doesn’t have to be like this, and this perception exists in large part because so many people try to pass off their COI as no big deal. But the literature has shown, time and again, that it is a big deal, and that no one is immune from the influence that things as little as pens or as big as unrestricted checks can have on perceptions. If you-the-scientist want us-the-reader to give weight to your opinion paper that, say, Ebola might mutate to become airborne and ZOMG, then perhaps you-the-scientist should give weight to the multiple peer-reviewed papers that say your center funding presents a conflict of interest that requires a necessary disclosure.

Everyone Likes to Fundraise When it Involves Penguins, Right?

November 20, 2014 Kelly ...and everything else

As many of you know, Dr. Jacquelyn Gill been the target of some serious online abuse this past week, all for just saying “hey, that shirt’s not cool to wear to a global, history-making science event.” And yet, in addition to her normal job and troll patrol, she started up the Twitter hashtag #scishirt so that men & women could show folks what scientists wear to work every day – and create a better image for aspiring young scientists to see.

So, how about we turn it around and help out some of Jacquelyn’s younger scientists as a thank you? Dulcinea Groff and Kit Hamley are fundraising half their budget for a trip to the Falkland Islands to study climate change. See those cute penguins to the right? If we want to keep them around, we need more information about how their home is being affected by climate change – work few people are doing.

As of this writing – about 7:45pm ET on Thursday, November 20, Dulcinea and Kit are $300 shy of the halfway point. That $5,000 is their airfare to the Falklands. Can we hit that by midnight? One way to find out,..

Aid Organizations Working in Ebola Regions (v2.0)

November 12, 2014 Kelly ...and everything else

This is an update of an earlier post.

We’re heading in to mid-November, and while the very disturbing logistics/supply chain chart showing that some personal protective equipment stock in countries battling Ebola are at “zero”—and had been for a while—have improved, the Ebola outbreak is still racing through Liberia, Sierra Leone, and Guinea. Sadly, the outbreak also appears to be gaining a small foothold in Mali.

Donation box. Note: Cats are not needed at this time.

Because, contrary to popular opinion, humans don’t always suck, people want to help. However, the best thing to do right now is use established supply lines.For more information on why this is the case, read Harvard professor Calestous Juma’s excellent Al Jazeera op-ed on how the lack of infrastructure in the affected region and how this affects all public health.

In support of both people’s inclination to give, and to have that giving filter through established supply lines, here is a list of trustworthy organizationsTrustworthy as defined by me, based on research, name recognition, and Charity Navigator if possible. Vague, I know, but I wanted to get an international-as-possible list up as quickly as I could. that, as of Tuesday, November 12, are still operating in areas of West Africa affected by Ebola. I’ll update this list as I come across more information, or as people enter/leave the affected region(s). Feel free to add your suggestions in comments.

Please check to see if your workplace does matching donations for charity.

The CDC Foundation
The CDC Foundation is an independent, nonprofit organization that connects individuals and the private sector with CDC’s expertise and distribution channels. The Fund’s Global Disaster Relief Response Fund is only activated during extreme emergencies, and has been activated for the Ebola crisis. They are providing personal protective equipment, communications equipment, emergency operations equipment, and funds for public health campaigns. The CDC Foundation received a rating of 96.07 from Charity Navigator. Donations are accepted worldwide.

The International Federation of Red Cross and Red Crescent Societies
IFRC is the world’s largest humanitarian network. Their donation page currently has a Syria crisis appeal, but if you select “donate,” the second option is for their Ebola campaign. You can also make a donation to your specific Red Cross or Red Cresent; here is the link to the American Red Cross website; that donation is tax-deductible. (I would recommend donating directly to the IFRC website, as that is guaranteed for Ebola efforts.) The American Red Cross receives an 85.25 rating from Charity Navigator.

Here’s the link to the Australian Red Cross donation page. They’re helping with awareness, contact tracing, medical treatment, and burial.

Direct Relief
Direct Relief is coordinating with doctors on the ground in Sierra Leone and Liberia to provide personal protective equipment and other supplies, which are being sourced directly from manufacturers. You can direct your donation to their Ebola efforts; they accept international donations. Charity Navigator gives Direct Funds a pretty amazing 99.71 rating.

AmeriCares
AmeriCares is organizing air shipments to hospitals in Liberia that have no necessary personal protective equipment, including gloves, gowns, and masks. They are accepting contributions for future shipments. AmeriCares receives a rating of 92.89 from Charity Navigator. Donations are tax-deductible.

Medecins Sans Frontieres/Doctors Without Borders
MSF has been pushed to its limits in the outbreak region, and vocal about it. What they need right now, however, is not more supplies, but more people. Their current fundraising campaign for Ebola is listed as fulfilled, and they are requesting that donations be made to their general fund for a more flexible response. MSF anticipates being in the West African region for at least six more months, so it’s entirely likely that they will re-open fundraising for that region. That said, given the extended timeline, it’s plausible general funds will be used. However, they are working in multiple regions of the world, so there is no guarantee that donations to the general fund will be used in West Africa. MSF/Doctors Without Borders receives a 92.03 rating from Charity Navigator. Donations are tax-deductible.

World Food Programme
With quarantine (quite literally cordon sanitaires) enacted in many of the Ebola-affected regions, food supplies are becoming critical, and people have begun breaking through these forced quarantines to find food. The World Food Programme is ramping up efforts to feed people caught in the Ebola quarantines. You can read more about that here, and donate at this link. World Food Programme is 100% funded by donations, and the US arm of the organization receives an 89.11 from Charity Navigator. US residents who would like their donation to be tax deductible can donate here.

UC San Francisco: Support the Emergency Ebola Response
UCSF clinician Dan Kelly has returned to Sierra Leone to operate a nationwide distribution network for emergency medications and supplies from their international partners; support the Ebola isolation and referral center at Kono’s Public Hospital; implement strict screening and control measures at the UCSF facility in Sierra Leone; coordinate emergency referrals to Ebola treatment centers in Kailahun District; collaborate with the District Health Management Team to implement effective contact tracing and sensitive community engagement. International donations are accepted, and US donations are tax-deductible.

UNICEF
UNICEF is working in Nigeria to help quell their Ebola outbreak. Those in the United States can make a tax deductible donation at this link. If you’re an international donor, go here to find your country. The United States Fund for UNICEF is rated 93.69 by Charity Navigator.

Elizabeth R Griffin Research Foundation
The Griffin Foundation is working in Ebola safety and prevention; you can find information here. I don’t know much about the group, but the foundation was formed in memory of a woman who died after contracting macaque-born B virus. The foundation works worldwide to promote safe and responsible practices for handling biological materials. So, you know, seems like they’re pretty useful right now. This foundation has not been rated by Charity Navigator.

Hospitals for Humanity
Hospitals for Humanity provide quality and affordable health care in disaster areas and people in the developing world. In addition to providing care, they also provide medical training and education to the local population. You can help by either volunteering for a medical mission or donating. Hospitals for Humanity has applied for 501(c)(3) status, but not received it yet. They are not rated by Charity Navigator.

Global Giving Ebola Epidemic Relief Fund

Ebola continues to spread across West Africa, with the number of those affected continuing to rise dramatically. The latest report from the World Health Organization counts 3,069 cases of Ebola in the region and 1,552 deaths from the disease so far.

Global Giving’s Ebola Epidemic Relief Fund focuses on getting grant money on the ground fast, so that rapid responses to changing situations can be made. They are in the middle of a 400,000 fundraising appeal. Here is a full list of grants to date:
-Â BRAC (Sierra Leone) — $10,000
– DEVELOP AFRICA (Sierra Leone) – $26,000
-Â DOCTORS WITHOUT BORDERS (Sierra Leone) — $5,000
-Â FOUNDATION FOR RESTORING WOMEN’S HEALTHCARE TO LIBERIA (Liberia) – $18,000
-Â GBOWEE PEACE FOUNDATION (Liberia) — $5,000
-Â GREATEST GOAL MINISTRIES (Sierra Leone) – $20,000
-Â IMANI HOUSE (Liberia) – $30,000
-Â INTERNATIONAL MEDICAL CORPS (Sierra Leone) – $10,000
-Â INTERNEWS (Guinea) — $10,000
-Â LIFELINE ENERGY (Liberia) — $5,000
-Â WEST POINT WOMEN FOR HEALTH AND DEVELOPMENT (Liberia) — $10,000

Global Giving is a charity fundraising web site that receives an impressive 97.94 rating from Charity Navigator. An anonymous donor is matching all new recurring monthly donations to the Ebola Epidemic Relief Fund. Donations are tax deductible for Americans.

Africa Responds
Africa Responds is a collaborative platform through which African organizations and allies pool their resources, networks, and collective voices to respond to the Ebola outbreak. Like Global Giving, they focus on local, already established and embedded local organizations. Their partner organizations have highlighted three critical areas of need: PPE, community mobilization and outreach, and caretaker and family support. Funds from the campaign will support these needs. Africans in the Diaspora, with support from International Development Exchange, will manage and disburse the funds as well as produce follow-up updates and reports. You can donate here.

International Rescue Committee
The International Rescue Committee staff and community health workers in Liberia and Sierra Leone are working to educate people on how to stop the spread of the virus. They are also bolstering local health systems with medical staff, protective gear and logistical support. They are also in the process of opening a treatment center in Liberia. Importantly, IRC is offering medical care to those with treatable diseases who would otherwise die as people are too afraid to visit health centers. (This is seriously so important. We’re at the point where it’s believed more people are now dying of treatable diseases than Ebola.) IRC has a very high 95.35 rating from Charity Navigator. You can donate to IRC here.

Partners in Health
Partners In Health was founded in 1987 to deliver health care to the residents of Haiti’s mountainous Central Plateau region. In the 25 years since then, PIH has expanded in Haiti’s Artibonite and Central Plateau regions, and launched additional projects around the world. PIH is working with two grassroots organizations: Last Mile Health in Liberia and Wellbody Alliance in Sierra Leone. These longtime PIH partners are already working to train health workers, identify sick patients, and deliver quality care.

PIH is actively recruiting clinicians, logisticians, and other health system professionals to support the work of Last Mile Health and Wellbody Alliance. They are seeking a large number of short-term volunteers and longer-term positions to help support the community-based effort needed to contain the Ebola outbreak. Experienced clinical and non-clinical health sector workers interested in staffing the ETUs and supporting existing community-based work should apply here. You can also donate here. Donations are tax deductible. PIH receives a 90.60 rating from Charity Navigator.

Heart to Heart International
Heart to Heart International works to broaden access to healthcare services and connect global partners with local communities. Because of the desperate need in West Africa—and to do their part to keep the virus from spreading further—Heart to Heart International will open and operate an Ebola Treatment Unit in Liberia. The facility is already under construction and is expected to open in November. They are also recruiting doctors and medical personnel to help, as well recruiting Liberian health workers to operate the facility. In addition to operating an ETU, HHI will continue to ship supplies like protective suits and gloves to help health workers on the ground. HHI receives an impressive 99.90 from Charity Navigator, and donations are tax deductible. You can donate here.

Google
This might seem strange, but right now, for every $1 you donate through Google, they will match and double. So if you donate a dollar, they’ll donate two. The goal is for another 7.5 million, and they’re almost there, but hey, every little bit. Give away Google’s money here.

There are more organizations listed at Charity Navigator.

Tag: science communication

The Centers for Disease Control & Hypocrisy?

Richardson & Almeling on the CDC’s Pre-pregnancy & FASD “Guidelines”

An Ebolanoia Anniversary–Or, The Emperor’s [Lack of] Disclosures

Everyone Likes to Fundraise When it Involves Penguins, Right?

Aid Organizations Working in Ebola Regions (v2.0)

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