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ethics – Life as an Extreme Sport
Life as an Extreme Sport

Another Kind of Fake News: Covert Marketing As Academic Research

Fake news and bad reporting (faithless journalism, perhaps) have been in the news pretty extensively since the election, and folks are trying to detangle trust, knowledge, and facts from fake news and click-bait headlines. One topic I haven’t seen addressed much is news around science articles – oh, I see the discussion of click-bait headlines and the flipflops of EGGS GOOD/BAD/WHO KNOWS. But what I don’t see so much of is a discussion of author affiliation.

For example, the Washington Post published a Wellness article about choline last week that caught my eye. There were an awful lot of claims being made about this supposed wonder-nutrient we don’t get enough of, and reading the original article seemed like a good idea. So I did.

Now, something that might not occur to folks is a normal part of reading academic articles for me: looking at author affiliations and disclosures for conflicts-of-interest. And in this case, it didn’t take long to find one. Sure, the first and corresponding author seemed okay on the surface (a professor of nutrition at George Mason), but the second author? Oh that second author.

That second author, a Victor Fulgoni the Third, is employed by Nutrition Impact, LLC. Who are they, you ask? Well hell, I didn’t know until I looked – but that’s the point. I looked. And I found:

Based in Battle Creek, Mich., USA, Nutrition Impact has helped one client successfully complete a new health claim petition (plant sterol esters and heart disease), helped another client successfully complete a Food and Drug Administration Modernization Act (FDAMA) notification authorizing another new health claim (potassium and blood pressure/stroke), and helped a third client obtain a new nutrient content claim (choline).

Emphasis mine.

This, of course, calls the entire research paper regarding choline into question, because the job of the second of two authors was to make choline a noted and noticeable health claim (almost certainly a supplement company looking to goad consumers into purchases), and the Washington Post fell for it hook, line, and sinker.

Is this fake news? Certainly not of the Facebook-style fake news generators, but it is a kind of fake news: it’s hiding a company agenda in the veneer of academic research, and thus eroding trust in both academic research and science/medical journalism.

Amazon’s “Toxic Culture” Doesn’t Come from My Needs as a Customer

Oh Internet, I tire. I really, really tire of reading rapidly tossed off think pieces that want to make broadly declarative statements as if they were the first to ever encounter such an idea. For example, did you know “we like-we really, really like-to get things cheap”? Annalisa Merelli wasn’t sure you were aware of this, so she—along with too many other think pieces to name—decided that the New York Times’ article about Amazon’s toxic work culture was the perfect time to place the blame of that culture squarely where it belongs: on the consumer. Which is a bit of an interesting claim, since, as the Seattle Times noted—and they’re a good paper to note this, given their proximity to the tech industry in the last forever—pretending that Amazon’s “toxic culture” is something new and unique to Amazon is ignoring the history of the tech industry as a whole, which has long been noted for a toxic culture that grinds up and spits out contractors and employees as fast as it can hire them. The toxic culture at Amazon isn’t because of the people buying Method cleaner and cat food, Mr Clean Magic Erasers, razors, the occasional bed sheet set, or Dutch oven—it’s from the tech industry as a whole.

amazonprimeIt fascinates me that people want to jump on the Blame Prime Members bandwagon in their think pieces, rather than look at what it is Prime is offering people: dependable, rapid access to a wide variety of goods and services. I mean, I can’t imagine why a perfectly able-bodied society where everyone has a car and access and a well-paying job and plenty of time, and can buy completely ethical, fair-trade food and clothes and goods and whatever else they need or want whenever they want would find a service like Amazon Prime useful.

…was the sarcasm too thick there? It’s been a bit of a morning.

It’s not that it surprises me that a gaggle of able-bodied writers would overlook the ease and convenience and accessibility of Amazon Prime for those who have physical disabilities; I think those of us who are disabled are rather accustomed to society erasing us. It does, however, surprise me that they’re so quick to overlook other members of society: working parents, single parents, folks who live far away from shopping centers where they can find both clothes and hardware and home goods. Not everyone lives in a suburban landscape where Target is 15 minutes in one way and Home Depot 10 the other; even those who do often don’t have the time to run to every single individual store. Maybe their commute takes hours every day; maybe they have children and the sorts of schedules that are full of soccer practice and school and camp and who knows what else, because I’m not a parent but I certainly remember being a kid and having siblings and the “go go go okay everyone collapse and sleep” aspect of a full household. Some folks live an hour or more from services, either because they’re in the middle of a mega-city and these big boxes are on the outskirts and difficult to reach, or because they’re in the middle of a rural area and there isn’t enough population density to support many stores. Maybe they live in that perfect suburban area with a perfect suburban life and car and they’re foiled by working non-standard shifts.

Of course, all that presumes we’re talking about people with cars, and a lot of folks don’t have cars, for reasons as diverse as being unable to drive to being unable to afford the costs of owning a car. For these folks, public transit—not the best thing even in the best cities with public transit—limits their options even further. That’s extra time commuting, time on the weekends, time you could be spending doing laundry or working or being with family or resting or fill in this blank here. Relying on feet, bikes, and public transit is possible for many things, and people do it in cities around the world-and in those same cities around the world, the people who can afford it have their laundry taken out and their food brought in. Amazon merely offers an equalizing aspect to at least some of that (it’s not doing my laundry yet, anyhow).

And yes, for those of us with disabilities, Amazon, and Prime in particular, can be a life-saver. Or at least a life-enricher. There’s no fighting mobility issues in a store, no navigating canes and walkers and chairs around clueless people, no having to figure out how to get a disabled body to the store (especially if your disability doesn’t allow driving). There’s no worry about lifting things that are too heavy, no calculus around what you can carry and what you need and whether it’s worth it to hurt yourself in the short term so that you don’t have to go out again two days later.

For everyone, whether they’re a stay-at-home mother juggling triplets and exhaustion or a busy professional or a disabled lawyer or any other combination of Person you can hodgepodge together from the mass options available, Amazon offers convenience and dependability: you can order what you need and get a dependable timeframe for when you’ll get it.

All of this? Not the fault of Amazon. It’s the fault of a culture and society that isn’t set up to include the different, the ultra-busy, those on different shifts or without flexible schedules, or yes, the disabled. So by all means, yes, take Amazon and society to task for not taking care of people, be they employees or customers or citizens. But don’t take people to task for utilizing the services offered to them—services often available to folks in mega-cities with the income to support said secondary delivery services—so that they too can maximize their time and priorities. And key to this is letting the individual decide what’s important to them: for example, over at USA Today, Amazon Prime member Jefferson Graham decides that

after reading this piece, I can wait. I don’t care if a new lens for my camera takes two or three days, or even a week to get to me. I don’t need a drone to whisk out a package from a warehouse and get it to me pronto. I want the company I’m dealing with to treat the human beings who work there with respect, not force them into a climate of fear.

Cool beans. Immediacy doesn’t mean much to him, and from all accounts he is able-bodied and able to patronize other shops when he does have an immediate need, so he can decide that this is not a participatory system he’s okay with, so he’ll opt out. But you cannot hold everyone to a standard set by an able-bodied, well-employed white man. Ability-and responsibility to a broader ethos-is going to look different to different people; the priorities of an able-bodied driver who lives in a small city will be different than a disabled person living in a mega-city.

Folks want to dovetail this into arguments about conscious consumption and ethical purchasing, which is a good conversation to have: but also a brutal one, because as Emily Finke noted, this practice often takes free time, significant money, and mobility for accessibility—and we’re back to leaving a lot of people out with that equation. We’re also left with at the conundrum that many people simply do not want to face: if you’re living in America, your entire existence is pretty much predicated upon exploitation: your food, from produce to protein; clothing; electronics; oil. It is a culture built upon the exploitation of others.

Means&AbilitiesOnce you understand that, you can start taking steps that work within your life to minimize exploitation of others while meeting your basic needs: consume less, buy with mindful awareness, decide where your priority is. Do you want to focus on avoiding sweatshop-sourced clothing? Do you want to eat locally and ethically? Does something else float your boat? Okay then—go for it. But again, this is a matter of balance and individual preference, and the vast majority of us do not earn the money that would be necessary to make ALL the changes, from non-sweatshop-sourced clothes to perfectly ethical and humane and local food to renewable energy and more. So we look at our circumstances, and we decide.

I am disabled, and my mobility limited. I don’t drive because of this. And for me, I balance ethically sourcing my food with my desire to have a life that’s about more than trekking via transit and foot to different stores to procure what my cats, my husband, and I need to live a healthy life. Amazon, and Amazon Prime, thus suits a necessary need that no one else in society has met.

Rather than cast aspersions on the consumer within the culture, start looking to the culture itself for change—and demand those changes come from those most, rather than least, able.


Note: this post is based on a casual series of tweets this morning that blew up like whoa. You can read the thread and chaos starting here.

Help Stop Ebola with this One Simple Trick!*

I mean, other than donating to aid organizations that desperately need help, that is.

See, yesterday, it was revealed there was yet another Western person being treated with ZMapp. Yep, that experimental drug that the world supposedly ran out of last week. Except, apparently, when there’s a Briton involved, in which case, someone checked behind the couch cushions, NIH thought to look in an unused cold storage closet, or who knows—because that’s the problem. The world now knows British man Will Pooley received at least one dose of ZMapp and will receive more, and no one has explained how the Royal Free Hospital happened to stumble across these doses that theoretically didn’t exist. In fact, all they’re saying is

[T]he team treating the nurse had sourced the drug through its clinical networks with the help of international colleagues.

-GIF-suspicious-William-Shatner-James-T.-Kirk-Star-Trek-GIFWell, that’s not at all suspicious. Clinical contacts? International experts? Sure, that doesn’t sound at all sketchy.

See, the thing is, we’re going back to risk communication, international relations, and the people who are dying en masse in affected countries who’ve been told that there is just no drug left. When you say “nope, sorry, no drugs left, we are all and completely out of ZMapp” and then manage to suddenly find some when a white British guy needs it, you foster a climate of mistrust—something that’s already a huge issue that doesn’t really need further fuel on the fire.

Which is why, at this point, when these random unaccounted for surprise stores of ZMapp are discovered, there needs to be transparency about where it came from, why we didn’t know about it, and why it was suddenly found. Because otherwise, it sure looks like the double standard of treatment for Westerners vs. native Western Africans is continuing to happen.

(*How does this help to actually stop Ebola? Right now, one of the bigger issues being seen in countries like Liberia and Sierra Leone is a complete lack of trust in Westerner health care workers who are trying to help. Reinforcing the idea that there is a cure for Westerners when people in Liberia, Sierra Leone, and Guinea have been repeatedly told there isn’t a cure for them is going to continue to emphasize this lack of reason to trust, and that trust is an extremely crucial step to all of the very basic things that need to be done to stop this outbreak from spreading any further. At this point, I’m leaning pretty hard on it being unethical for doctors or journalists to report on ZMapp use without also identifying the source of the drug.)

Paternalism, Procedure, Precedent: The Ethics of Using Unproven Therapies in an Ebola Outbreak

The WHO medical ethics panel convened Monday to discuss the ethics of using experimental treatments for Ebola in West African nations affected by the disease. I am relieved to note that this morning they released their unanimous recommendation: “it is ethical to offer unproven interventions with as yet unknown efficacy and adverse effects, as potential treatment or prevention.” WHOsOnFirstThere are, of course, the common caveats about ethical criteria guiding the interventions, but ultimately the recommendation has saved me from a tortured “WHO’s on first”-style commentary.1 I’m sure we all appreciate that.

But just because the WHO recommendation follows what I’ve been arguing for the last 10-odd days doesn’t mean that the argument is actually over. In fact, as far as I can tell, it’s just getting worse, where worse should be interpreted to mean “even more people coming out of the woodwork to argue about ethics when they don’t have any familiarity with ethics.” Granted, Twitter is full of sample bias, but still. It is for this reason that I think it’s still important to post this statement on the ethics of providing unproven interventions that my husband (a real life bioethicist) and I worked on last week. We were side-tracked by needing to actually verify the science behind ZMapp, as well as the additional hands-throwing-up of hearing that ZMapp was provided for a Spanish priest after various US public officials stated there was none left to give.2


Paternalism, Procedure, Precedent
The Ethics of Using Unproven Therapies in an Ebola Outbreak

A “secret serum.” A vaccine. A cure. A miracle. With the announcement of the use of ZMapp to treat two Americans sick with the Ebola virus with apparently no ill effect, the hum and buzz on social media, commentary websites, and even the 24/7 news cycle, has become one of “should the serum be given to Africa? Will it?” The question has dominated for more than a week, and become something that the World Health Organization feels it needs to address by convening a panel of medical ethics experts to offer an analysis of what should be done.

And the general question about untested cures/vaccines in the event of a disease pandemic is an important one; there are already guidelines for what kind of treatments can and will be made available during a flu pandemic, and it seems quite sensible that a guideline be developed for all potential pandemic pathogens. However, it isn’t a question that is relevant in the current context, because we are already past that.

While people may be stating “should the serum be made available?” that’s not the question being asked.
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Virtually Speaking Science: A New Place to Find Me on the Interwebs

In what is likely the worst “kept under wraps” bit of news in a while, I’m happy to announce that I’m joining the Virtually Speaking Science collective as a new host. But before I get to roll out the welcome mat and chatter with other people about their work, I’m going under the interviewee lens; Jennifer Ouellette is interviewing me Wednesday, May 14, at 8pm ET/5pm PT.

What is Virtually Speaking Science? It is a live webcast ‘radio’ with a digital, Second Life studio audience of:

[i]nformal conversations hosted by science writers Alan Boyle, Tom Levenson and Jennifer Ouellette, who explore the often-volatile landscape of science, politics and policy, the history and economics of science, science deniers and its relationship to democracy, and the role of women in the sciences.

VSSI’ve been having a blast getting to know my co-hosts, setting up my Second Life avatar, and getting to know my producer, Sherry Reson. And for a touch of nostalgia, VSS is hosted by the Exploratorium in Second Life. As some of you know, I not only grew up in the San Francisco Bay Area, I spent many, many hours in the Exploratorium. In some ways, this is very much a coming home for me; a long time later, I’m back—at least virtually—at one of the first places that sparked my interest in and wonder for science.

I hope you’ll tune in and join me. I think we’re going to have a lot of fun.