Screening vs Diagnostic – Differentiating Difficulties Lead to Tragedies

I’ve been a relatively vocal critic of unregulated over-the-counter and direct-to-consumer screening kits for years, and moreso in the last few, as 23andMe flirted with the DTC genetic screening market. I felt (and still believe) that yanking the 23andMe kits was necessary because they’d not been validated and had no overight or FDA approval. Perhaps not surprisingly, the most common pushback I received on this1 was that no one would actually use an OTC, DTC, or otherwise unregulated test to make decisions.

This Boston Globe story, by Beth Daley at the New England Center for Investigative Reporting, helps to prove my point: people do make life-changing decisions based on the results of screenings and unregulated (or non-regulated) tests, instead of diagnostic tests. Aside from being a very big problem, this can often be incredibly tragic:

Now, evidence is building that some women are terminating pregnancies based on the screening tests alone. A recent study … found that 6.2 percent of women who received test results showing their fetus at high risk for a chromosomal condition terminated pregnancies without getting a diagnostic test such as an amniocentesis.

And at Stanford University, there have been at least three cases of women aborting healthy fetuses that had received a high-risk screen result. …

In one of the three Stanford cases, the woman actually obtained a confirmatory test and was told the fetus was fine, but aborted anyway because of her faith in the screening company’s accuracy claims. “She felt it couldn’t be wrong.”

And no, these screening kits aren’t subject to regulation, because yay, loopholes. Expect them to be closed in oh, nine years, give or take.

It’s always nice to have another point of data to support an argument.

And yes, possibly I’m humming a revised version of a song from West Side Story, as I idly think about sending this link to people who told me there was just no way people’d make life-changing choices without doctor feedback/approval. I feel petty, oh so petty, I feel petty and witty and bright,...

  1. Well, possibly second-most. I did receive a lot of “it’s my DNA and I’ll do what I want with it” retorts, too. []

Privilege, Thanksgiving, and Black Friday – 2014 Edition

Last week, I ended up spending a day hiding in an unused office at work. I justified it to the one person who asked by saying I wanted to stay away from everyone’s cooties, because I had a couple of visitors coming I didn’t want to be sick for. The reality, though, is that after hearing the racism and classism on display Thursday afternoon, I couldn’t stand to be around my co-workers for one more minute.

An example of what I listened to:

    “People who don’t like Thanksgiving should go back to China!”
    “People who don’t like Thanksgiving should be punched in the face!”
    “Anyone who shops on Black Friday is an idiot who should be sterilized.”
    “Shopping on Black Friday ruins America.”

Charming, eh? Especially when you consider I have a Native American aunt and cousins, my nieces are adopted from China, and my husband (and most of my in-laws) are Australian. When called on this, a co-worker simply stated that he was proud to offend everyone.

While it’s easy enough to dismiss this as yet another example of the questionable environment I work in, it doesn’t take much to find opposition to stores being open on Thanksgiving or people opting to shop on Black Friday. And, as usual, I have relatively complicated thoughts about this. Is K-Mart going too far, saying that people will be fired if they don’t work Thanksgiving? Yes, that one’s easy. But is it equally too far to insist everyone should have the day off, everything should be closed? Well, clearly no one actually believes that, because the only targets for this sort of action are retail stores–when is the last time you heard someone calling on restaurants to close on Thanksgiving or Black Friday?

When’s the last time you heard someone arguing that these mandatory days off work should be fully paid days off?

As I noted last year,

[i]t’s easy to be cynical about holiday sales creep sitting here from a position of privilege that allows me to choose to spend extra money for convenience, and I’m grateful to be reminded of that. Yes, I think the consumer culture is a travesty and it encourages waste and all of the typical things you hear spouted off about holidays sales and creep, but if those sales mean that some of the people waiting outside in long lines in the bitter cold have a chance to grab at something to help make life easier, or maybe even better? Then I should probably just sit down, shut up, and enjoy the privilege that having a middle class, white collar job gives me, without holding others to a standard of living that, until a few years (and an education) ago, I didn’t have access to myself.

It’s all well and good to insist people should have Thanksgiving off work–but shouldn’t that insistence come along with it being a paid day off? Because if not, you’ve suddenly shifted from advocating people have time off that you have, to advocating people be forced to lose money because you’re opposed to being reminded that there are people out there who have to make the choice between spending time with family, or just having a day off, and working to make ends meet.

Many moons ago, I was a waitress with a high school equivalency degree. I worked Thanksgiving and Christmas. I shopped Black Friday if I wasn’t working. I scrounged pennies to buy a new stereo at a Black Friday sale. I idly wished I could have days off to spend with my roommates, friends, boyfriend–the idea of having the airfare to go visit my family, to take that much time off, was such a fantasy it was left for daydreams, not wishes. Even when I was a newlywed, slowly working my way up in the software industry, with a software engineer husband, pennies were literally counted to make sure we had money for groceries (when was the last time you had to calculate that to the penny?).

I’m a newlywed again, and this time I have a sizable education and a comfortable white collar job. My husband is a postdoc at a prestigious Ivy League university, and we can do things like shrug off an expensive cab ride home because we don’t feel like waiting for the train, or idly discuss buying multiple pairs of winter boots so we don’t have to wear wet shoes. For us, convenience is often worth the extra money we’ll spend, which is why you won’t see us out shopping Thursday or Friday. But we can do that math; we can agree that we’d rather be comfortable than cold, and that we don’t need anything so badly a line is worthwhile. We don’t have to worry about punching in a clock, being paid by the hour, or the penalties that come from having jobs that don’t give us paid time off.

We are, in a word, privileged.

It’s worth not forgetting that, especially when pontificating about holiday work schedules.


I realize a lot of people are loathe to click through and read the past, so here is my 2013 post on privilege and holiday shopping.

Thoughts on Privilege and Holiday Sales (Thanksgiving Retail, Black Friday, etc)
Posted on November 26, 2013

There’s been a lot of talk this year about stores open on Thanksgiving, and I was ready to–and honestly, had–join in the general crankiness towards retailers doing so. I’ve never been a huge fan of Black Friday boycotts, because I do understand the idea and appeal of a sale, but grumbling at the encroaching opening times and intense sales? Yeah, I readily admit it.

In fact, I was already in grumbling mood this evening, because I made the mistake of swinging by the store to pick up some staples for the long weekend, and to consider some sort of protein for Thursday. The store was already building to crazy levels of people panicking over the oddest things, and I made a choice, on the spot, to save myself some headache and get everything I could possibly need right then, rather than saving some of the standard Trader Joe’s items for tomorrow. (I can only imagine what it’s going to be like in there.) Yes, I was going to pay more for bananas, but it was a tax I was willing to pay to avoid people at holiday panic.

That was my frame of mind as I hopped off the bus, groceries in hand, and started making my way through the transit center. I got stuck behind two young women and what was five or six very young children between them; they both had strollers and there were other children milling around, one on hip, and so forth. There were repeated references of “come to your mother” and such that made it clear that these young women were mothers to at least some of the children.

If it helps your mental image, they were also black.

I was, in my cranky mood, mostly irritated at being stuck behind strollers in a space not wide enough to pass. But being there, it was hard not to hear them talking, and they were talking about the upcoming sales. (Yes, I rolled my eyes. I’m not proud.) One was telling the other about a sale on TVs and how she was tempted, but there was some other sale going on and her friend was going to the TV one, but it was one per household. The other said she was going to get in line at a store I missed the name of, because they had $179 computers.

That stopped the conversation, and the walking, cold. “Computers?” “Yeah, laptops.”

I managed not to run into them, they saw me and apologized for stopping, and let me walk by them. As I was passing, I heard the one who’d been talking about the TV say, “A laptop for $179? I could do my homework at home. I wouldn’t have to stay at school late. I wouldn’t have to pay for daycare… or I could get another job!”

As I walked off, I continued hearing her talk about how much having a $179 laptop–one her friend admitted wasn’t a great machine, but workable–would change her life, whether she opted to get another job or save the money that daycare cost her, how it might impact her grades. As I rounded the corner and their conversation faded from hearing, it sounded like she was talking to someone else, sharing the news, and asking how much internet at home would cost.

I walked off to jump on the high speed train home, because I hit the right time and the 50 cent fare increase is an annoyance, not impossible. There are buses that take the same route; I ride them sometimes, when I miss the high speed train. The faces I see on the train rarely overlap with the faces I see on the bus, even though the stops are similar, and the train is significantly faster.

I made the choice, today, to spend an additional $10 on groceries rather than deal with crowds and inconvenience. But I had a choice.

I remember being in my early 20s, literally counting every cent being spent on groceries, because my ex-husband and I barely had any money. I remember my father sneaking groceries into my car, and I remember being grateful for holiday sales.

Even then, we owned computers and had internet access.

It’s easy to be cynical about holiday sales creep sitting here from a position of privilege that allows me to choose to spend extra money for convenience, and I’m grateful to be reminded of that. Yes, I think the consumer culture is a travesty and it encourages waste and all of the typical things you hear spouted off about holidays sales and creep, but if those sales mean that some of the people waiting outside in long lines in the bitter cold have a chance to grab at something to help make life easier, or maybe even better? Then I should probably just sit down, shut up, and enjoy the privilege that having a middle class, white collar job gives me, without holding others to a standard of living that, until a few years (and an education) ago, I didn’t have access to myself.

Everyone Likes to Fundraise When it Involves Penguins, Right?

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.

OLYMPUS DIGITAL CAMERASo, 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)

Featured

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.

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.1

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 organizations2 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:
• BRAC (Sierra Leone) – $10,000
• DEVELOP AFRICA (Sierra Leone) – $26,000
• DOCTORS WITHOUT BORDERS (Sierra Leone) – $5,000
• FOUNDATION FOR RESTORING WOMEN’S HEALTHCARE TO LIBERIA (Liberia) – $18,000
• GBOWEE PEACE FOUNDATION (Liberia) – $5,000
• GREATEST GOAL MINISTRIES (Sierra Leone) – $20,000
• IMANI HOUSE (Liberia) – $30,000
• INTERNATIONAL MEDICAL CORPS (Sierra Leone) – $10,000
• INTERNEWS (Guinea) – $10,000
• LIFELINE ENERGY (Liberia) – $5,000
• 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.

  1. 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. []
  2. Trustworthy 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. []

OutbreakChat: A Livetweet of a Movie That Gives People Nightmares,…

Outbreak-ForBlog…and probably not for the reason you think. Outbreak is one of those movies people seem to either love or hate (or possibly love to hate); almost everyone I know who has anything to do with public health, infectious diseases, or virology tends to swear up a blue storm when the movie comes up.

So naturally, a group of us are going to watch it in real-time tonight, drinking and live-tweeting our thoughts on Twitter. This will include fact-checks, snark, and almost certainly questions and answers from the crowd-at-large. Who is doing this? Well, you might remember David Shiffman (@whysharksmatter) from my Virtually Speaking Science interview a few months ago; while he might seem like an odd choice to organize this, remember he has significant experience with pop culture/movie portrayals of sharks, mermaids, and other scientifically incorrect portrayals of the ocean.

Tara Haelle (@tarahaelle) is a freelance journalist probably best known for her excellent article that debunks flu myths. She’s written extensively on science and the need for accuracy in media imagery and discussion.

Nicholas Evans (@neva9257) is a post-doctoral bioethicist at the University of Pennsylvania’s Department of Medical Ethics and Health Policy, based in the Perelman School of Medicine. He specializes in biosecurity, bioterrorism, and the ethics of pandemic preparedness, and recently wrote a piece for Slate explaining why Ebola is not a bioweapon, despite media myths. (He’s also my husband.)

And what am I (@rocza) doing involved in this? Well, aside from spending much of the last couple of months educating Twitter about Ebola, blogging extensively about Ebola, and doing Justice Putnam’s “The Morning After” radio show to talk about the ethics of science journalism and Ebola coverage, I once upon a time was pursuing a PhD in bioethics and philosophy, looking at how popular media portrayals of medical issues affects our medical-decision-making (a continuation of my undergraduate thesis on autonomy and medical ethics). I’ve taught courses through pop culture (Stargate and Applied Ethics), and one of my most popular and invited lectures was on why we watch reality TV. I also have a weird affinity for Ebola; I once intended to become a virus hunter, and I’ve been studying Ebola, outbreaks, and the research for going on 20 years.

We are, of course, hoping more people will join in the viewing party-both experts and lay people alike. So pop up some popcorn, grab your favourite beverage of choice, and join us at 8pm ET tonight (#OutbreakChat) to see firsthand what set the foundations for the Ebolanoia that has raced through the world these past few months.

Edited to add: Bingo cards are available on Twitter.