Category Archives: Thoughts

Collecting Thoughts on the FDA vs. 23andMe

Lantern Slides: Heritance of Clefting

I’ve been reading many of the news articles and blogposts about the 23andMe / FDA controversy, and marking interesting points, agreements and disagreements, various perspectives. These are some of my favorite bits from the pieces that have come out so far. I have a distinct personal bias regarding this extremely complicated topic, but also have good friends on “the other side,” as well as having a professional commitment to attempt to be unbiased. In this collection of quotes and highlights, I try to not let my own bias interfere too much, and to fairly represent opinions both pro-FDA and pro-23andMe. Please note that, on both sides, there are extremists, who I found typically didn’t clearly express the complexity of the issues, thus most of the quotes excerpted below are from more moderate authors.


Pic of the Day - PGen
Thoughts on the FDA

“The Food and Drug Administration’s recent directive to the company 23andMe to stop marketing its genetic tests directly to consumers is a shortsighted, heavy-handed, double-standard act of paternalism.”

Marchant, Gary. The FDA Could Set Personal Genetics Rights Back Decades. Slate Nov. 26 2013 12:39 PM. http://www.slate.com/articles/technology/future_tense/2013/11/_23andme_fda_letter_premarket_approval_requirement_could_kill_at_home_genetic.html

“I am deeply frustrated by the simplistic narrative of OMG FDA BIG GUBBERMINT SILENCING DARING ENTREPRENEUR. It’s not that simple.”

Wilbanks, John. FDA’s Culture Is Mendelian Dominant Over 23andme’s Business Model. DEL-FI November 30, 2013. http://del-fi.org/post/68560843111/fdas-culture-is-mendelian-dominant-over-23andmes

“The outrage over the FDA’s treatment of 23andMe is the wrong response. We should be holding 23andMe accountable for the claims they make in marketing their product. Even a product with such great potential should have to support its claims with valid evidence.”

Curtiss, Chase. Here’s what health entrepreneurs can learn from 23andMe. The Verge Beat November 29, 2013 5:11 PM. http://venturebeat.com/2013/11/29/heres-what-health-entrepreneurs-can-learn-from-23andme/

“This incident highlights the tension between the paternalistic medical establishment that arose to deal with the dangers of 19th-century quack medicine, and a “techno-populist” element of American society pioneering personal health assessment and decision-making by leveraging new information technologies.”

Khan, Razib. The FDA’s Battle With 23andMe Won’t Mean Anything in the Long Run. Slate Nov. 25 2013 2:46 PM. http://www.slate.com/blogs/future_tense/2013/11/25/fda_letter_to_23andme_won_t_mean_anything_in_the_long_run.html

“If the F.D.A. indeed insists on making 23andMe prove beyond doubt the validity of every single correlation, no genetic-testing service will be able to economically deliver medically relevant genetic information directly to consumers. It will destroy the industry and leave medical genetics in the hands of a medical establishment that has already failed to give people an easy way to obtain and use the elemental information in their own spit.”

Dobbs, David. The F.D.A. vs. Personal Genetic Testing. New Yorker November 27, 2013. http://www.newyorker.com/online/blogs/elements/2013/11/the-fda-vs-personal-genetic-testing.html

“Years ago, the FDA used the same argument against selling blood glucose meters to patients with diabetes. I believe that the FDA is wrong in saying that data in the hands of patients will do damage.”

Bartlett, Ann. Genetic Testing and the FDA. Health Central Wednesday, November 27, 2013. http://www.healthcentral.com/diabetes/c/9993/164554/genetic-testing-fda?ap=2008

“FDA acted properly in view of 23andMe’s cavalier attitude toward its regulatory obligations and its failure to meet past commitments. However, it would be a setback for science if 23andMe were not allowed to proceed. For its research model to deliver, it needs more people, far more people in its database. A campaign to sign up a million customers is a good start, and not losing momentum is essential. Perhaps 23andMe and FDA can find an accommodation — such as a consent order — that allows 23andMe to move forward while catching up on its overdue obligations, under threat of financial penalties or even perhaps the licensing of its database.”

Munos, Bernard. 23andMe: A Fumbling Gene In Its Corporate DNA? Forbes 11/29/2013 @ 10:19AM. http://www.forbes.com/sites/bernardmunos/2013/11/29/23andme-a-fumbling-gene-in-its-corporate-dna/

“It reads like the letter of a jilted lover,” Misha Angrist, a former genetic counsellor who writes about personal genomics and teaches at Duke University, said. “ ‘We went on fourteen dates! We exchanged all these e-mails! We held hands in the park! Now you’re telling me, “F*** you,” and kicking me to the curb.’ ”

Dobbs, David. The F.D.A. vs. Personal Genetic Testing. New Yorker November 27, 2013. http://www.newyorker.com/online/blogs/elements/2013/11/the-fda-vs-personal-genetic-testing.html

“Though the FDA talks up progress, there is a risk that it may slow it down. The agency is weighing regulations on test kits sold directly to consumers, laboratory tests and software that analyses raw genetic data. It is clear that 23andMe is not the only testing firm in its sights.”

And the FDA: A regulator brings a genetics company to a halt. Economist Nov 30th 2013. http://www.economist.com/news/business/21590941-regulator-brings-genetics-company-halt-and-fda

“Is the FDA and the rest of the medical establishment too conservative about innovation and health data that consumers can get directly? Well… is the Pope Catholic?”

MacManus, Richard. Thoughts On 23andMe & The FDA. November 27, 2013. http://ricm.ac/2013/11/27/thoughts-on-23andme-the-fda/

“I asked Dr. Hamburg if she were to have any power that FDA currently lacks, what would it be? The central thesis of her reply was: “I also think we need to find a way – maybe it’s just completely unrealistic – where we can have more flexibility in the system so that every time there’s a crisis or a recognition of a need to do more…we don’t have to go through the process of seeking new legislation.””

Kroll, David. Why The FDA Can’t Be Flexible With 23andMe, By Law. Forbes 11/28/2013 @ 8:45AM. http://www.forbes.com/sites/davidkroll/2013/11/28/why-the-fda-cant-be-flexible-with-23andme-by-law/


PGEN, Take 2
Thoughts about 23andMe

“Either 23andMe is deliberately trying to force a battle with the FDA, which I think would potentially win points for the movement the company represents but kill the company itself, or it is simply guilty of the single dumbest regulatory strategy I have seen in 13 years of covering the Food and Drug Administration.”

Herper, Matthew. 23andStupid: Is 23andMe Self-Destructing? Forbes 11/25/2013 @ 3:51PM. http://www.forbes.com/sites/matthewherper/2013/11/25/23andstupid-is-23andme-self-destructing/

“On the Twitterz, I wrote that 23andMe’s attorneys should be disbarred for letting things reach this point. Interestingly, it appears that General Counsel left the company several weeks ago (and no replacement has been found). I’m not always a big fan of the FDA (they still haven’t really figured out how to approve new antibiotics), but the reality is that the FDA is like those humongous tractors used to move space rockets: they’re slow, but crush everything in their path. You can’t bullshit these guys–they just keep coming.”

Mike. Some Thoughts on the FDA Action Against 23andMe.com. Mike the Mad Biologist November 26, 2013. http://mikethemadbiologist.com/2013/11/26/some-thoughts-on-the-fda-action-against-23andme-com/

“The consequences of mistakes by 23andMe can be deadly serious. If it reports a “false positive” for a major disease, that can alter someone’s whole life (though I’m rather sure that any medical professional would obtain results from another service to confirm positive results).”

Khan, Razib. The FDA’s Battle With 23andMe Won’t Mean Anything in the Long Run. Slate Nov. 25 2013 2:46 PM. http://www.slate.com/blogs/future_tense/2013/11/25/fda_letter_to_23andme_won_t_mean_anything_in_the_long_run.html

“But as the FDA frets about the accuracy of 23andMe’s tests, it is missing their true function, and consequently the agency has no clue about the real dangers they pose. The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public.”

Seife, Charles. 23andMe Is Terrifying, But Not for the Reasons the FDA Thinks. Scientific American November 27, 2013. http://www.scientificamerican.com/article.cfm?id=23andme-is-terrifying-but-not-for-reasons-fda

“Some experts claim that the risk of ailments like Type 2 diabetes can only be partially calculated based on genetic information. A credible diagnosis would require understanding a lot more about the person’s lifestyle and health history. Promoting a do-it-yourself culture when talking about serious health concerns like cancer and heart disease might have major downsides. However, the opinion in favor of 23andMe is that a dangerous double standard is at work. Today a doctor can sell many types of genetic tests to a patient, at a much higher cost. Only a few have received FDA approval. So why penalize the direct-to-consumer model?”

Kaushik, Preetam. FDA vs. 23andMe: The DNA of a disagreement. All Voices Nov 29, 2013 at 8:35 PM PST. http://www.allvoices.com/contributed-news/16062954-fda-vs-23andme-the-dna-of-a-disagreement

“However, according to one expert, the accuracy of the test is not the biggest issue. The company’s testing methods have been found to meet federal standards for lab testing, called Clinical Laboratory Improvement Amendments (CLIA), said Amy Sturm, a genetic counselor at The Ohio State University Wexner Medical Center. A greater problem is that the results provide “a very incomplete view” of a person’s risk for a given disease, Sturm said.”

Rettner, Rachel. 23andMe: What’s Really Wrong with Personal Genetic Tests. November 26, 2013 01:55pm ET. http://www.livescience.com/41534-23andme-direct-to-consumer-genetic-test-shortcomings.html

“Unfortunately, due to all the complex interactions between the markers, this full unravelling is impossible. The number of interactions is probably so high that every patient will have his or her own unique complex cause of disease. And what has never happened cannot be identified or predicted by big data. Advances in genome science will improve what tests offer, but these improvements will be small. While the hope is based on big data, the reality is that most diseases are simply not genetic enough. Other risk factors such as diet, body weight, smoking, exercise and stress are too important. And big data cannot change the biology of diseases – it will not make them more genetic.”

Janssens, Cecile. It is game over for 23andMe, and rightly so. Pando Daily November 27, 2013. http://pando.com/2013/11/27/it-is-game-over-for-23andme-and-rightly-so/

“It’s not all 23andMe’s fault. In my book research, I’ve read a lot about personal genomics. And the more I read up on genetics, epigenetics, etc., the more I see that the scientific community still has very little clue about what actually causes disease.”

MacManus, Richard. Thoughts On 23andMe & The FDA. November 27, 2013. http://ricm.ac/2013/11/27/thoughts-on-23andme-the-fda/

“THAT is the future. The DTC SNP chip era is ending. 23andMe’s two main competitors, Navigenics and deCODEme, already left the market. 23andMe’s SNP chips are slipping rapidly into the past. And 23andMe knows it.”

Greely, Hank. The FDA Drops an Anvil on 23andMe – Now What? Stanford Law School Blog November 25, 2013 http://blogs.law.stanford.edu/lawandbiosciences/2013/11/25/the-fda-drops-an-anvil-on-23andme-%E2%80%93-now-what/

“As to what will happen now is actually very simple. 23&Me will have to either file as a diagnostic and go through medical approval (which will cost millions of dollars) or start to only offer their service through a medical practitioner, more than likely through a clinical geneticist that can walk a patient through the intricacies of genetics and disease. The problem though is that according to the US News, there are only 358 clinical geneticists currently practicing in the United States. Measure the knowledge dissemination of a clinical geneticist, who usually only sees patients through referral, to the marketing power of a Google backed company like 23&Me, that was gearing up for a television marketing campaign: the outcome is a nail in the proverbial coffin for recreational genomics. As for 23&Me, its problems will only worsen as it will struggle to validate itself through the FDA since genomics is still in its infancy, thus: RIP the only viable, scalable consumer genetics company in the world.”

Pablo, Juan. What is next for Direct to Consumer Genetics. 1EQ Nov. 27, 2013. http://1eq.me/blog/?p=182

“We’re ignoring the bigger issue! The real reason 23andMe can’t test for my mutation is the company who formerly held a patent on BRCA1 and BRCA2 still has a proprietary database of our genetic mutations, and they aren’t sharing it with anyone! We need to fix THIS. We need for the government to help us figure out how data can be shared rather than be treated as a trade secret.”

Andrea. FDA B*tchslap of 23andMe: A BRCA Previvor’s Perspective. Brave Bosom November 26, 2013. http://www.bravebosom.com/fda-btchslap-of-23andme-a-brca-previvors-perspective/

“23andMe is simply doing what the Internet does best: forcing old dogs to learn new tricks. That’s what the fight between Uber and taxicab commissions is about. Same for AirBnB and hotel regulators. The only profession slower to change how they do things than doctors is bureaucrats. So the FDA’s reaction is understandable — but misguided.”

Szoka, Berin. FDA Just Banned 23andMe’s DNA Testing Kits, and Users Are Fighting Back. Huffington Post 11/26/2013 7:46 pm. http://www.huffingtonpost.com/berin-szoka/fda-just-banned-23andmes-_b_4339182.html


23andMe Celiac Disease Risk Markers
Thoughts about Regulation of Personal Genetic/Genomic Services

“We need DTC screening. It helped me. It’ll help many others. But until the FDA learns how to deal with Bayes’s rule and its discomforts – and until DTC companies figure out a business model that isn’t based on massive loss leadership – we’re going to keep coming back to this clash of culture and business models. Both sides need to make some changes if we’re going to avoid doing this over, and over, and over.”

Wilbanks, John. FDA’s Culture Is Mendelian Dominant Over 23andme’s Business Model. DEL-FI November 30, 2013. http://del-fi.org/post/68560843111/fdas-culture-is-mendelian-dominant-over-23andmes

“23andMe embodies a generation preoccupied with itself. Our right to know has superseded our ability to understand. Empowerment has evolved as data, information, knowledge and wisdom are almost seen as one in the same. Whether 23andMe’s reporting is actionable is to miss the point. When you’ve got your data, what more do you need, really? Epigenetics…what epigenetics?”

Vartabedian, Bryan. 23andMe – Why Our Big Government is Right. 33 Charts November 28, 2013. http://33charts.com/2013/11/23andme-government-is-right.html

“As a citizen, I expect corporate transparency for any new health product. As a patient, I think the risks of taking the test outweigh the benefits for my health. As a doctor, I have my concerns for people with distress or misinformation from results of an unproven genomic test. As a human being, I worry about misuse and unintended social consequences of our genetic heritage.”

Matthew Katz on 23andMe: “Return to Sender, Genome Unknown: Seven Reasons I Will Return My Personal Genome Kit.” e-patients.net December 3, 2013. http://e-patients.net/archives/2013/12/matthew-katz-on-23andme-return-to-sender-genome-unknown-seven-reasons-i-will-return-my-personal-genome-kit.html#!

“Our society has increasing information and public access to information. While it is difficult for me to think that this isn’t a good thing overall, we have to thoughtfully consider the possible unintended negative consequences. This case is part of a larger pattern of sacrificing quality-control filters for the sake of open access. This increasingly puts the burden on the public to make sense of sometimes complex and technical information. Everyone, now, can be their own geneticist.”

Novella, Steven. The FDA and Personalized Genetic Testing. Science Based Medicine November 27, 2013. http://www.sciencebasedmedicine.org/the_fda_and_personalized_genetic_testing/

“Community forums and news sites across the web exploded with debate, with most people rallying to 23andMe’s defense. The company’s ample support-base claims that the Food and Drug Administration is over-regulating, and is stifling innovation. However, the majority of geneticists and medical professionals I’ve spoke with have sided with the Food and Drug Administration, arguing that many patients require genetic counseling after receiving DNA test results that point to a high risk of cancer and other life-threatening conditions.”

Farr, Christina. Here’s why the FDA is targeting 23andMe. MedCityNews November 26, 2013 10:00 am http://medcitynews.com/2013/11/heres-fda-targeting-23andme/

“When 23andMe sent us our results, we followed their advice: we asked our doctor to talk about them. Most doctors didn’t know where to begin. But the more of us ask about 23andMe, the more the medical profession is catching up. Slowly but surely, they’re brushing up on genomics, taking the time to understand the site, and talking to us about our results and what, if anything, to do about them.”

Szoka, Berin. FDA Just Banned 23andMe’s DNA Testing Kits, and Users Are Fighting Back. Huffington Post 11/26/2013 7:46 pm. http://www.huffingtonpost.com/berin-szoka/fda-just-banned-23andmes-_b_4339182.html

“If you scare somebody into believing they’re high risk, they could take actions that hurt their health,” says Gutierrez. Not only is the data on some genetic links inconclusive, he adds, it’s well-chronicled that patients can push their doctors into authorizing unnecessary procedures. “Doctors do a lot of double mastectomies because of fear.”

Brady, Diane. Do Genetic Tests Need Doctors? FDA Defends Its Challenge to 23andMe. Business Week November 27, 2013. http://www.businessweek.com/articles/2013-11-27/do-genetic-tests-need-doctors-fda-defends-its-challenge-to-23andme#r=hp-lst

“Should this third party be a doctor, as some (mostly doctors) are arguing? There are certainly doctors out there who have a great grasp of human genetics. But there aren’t a lot of them. And even the doctors who do know the world of human genetics inside and out aren’t in a position to help people navigate every nook and cranny of their genome. This is a job for software, not for people.”

Eisen, Michael. FDA vs. 23andMe: How do we want genetic testing to be regulated? November 26, 2013. http://www.michaeleisen.org/blog/?p=1480

“This is a broad cautionary tale,” says Quackenbush. “We need to be careful about how we define phenotypes, such as whether a patient is likely to respond to a drug or have an adverse event, because if we don’t do it well, we’re not going to have good tools for advancing personalized medicine.”

Hayden, Erika Check. Personalized cancer treatments suffer setback. NATURE 27 November 2013. http://www.nature.com/news/personalized-cancer-treatments-suffer-setback-1.14238


OTHER COLLECTIONS

Alexander, Lindsey. Six smart takes on the 23andMe FDA standoff. MedCityNews November 27, 2013 11:58 am. http://medcitynews.com/2013/11/smart-takes-23andme-fda-standoff/

Dobbs, David. I Got Your 23andMe – FDA Food Fight Links Right Here. Neuron Culture November 30, 2013. http://daviddobbs.net/smoothpebbles/i-got-your-23andme-v-fda-links-right-here/

Is Google Knowledge? Is a Library?


Is Google Knowledge? | Idea Channel | PBS Digital Studios: http://www.youtube.com/watch?v=aCwLQrJz4Bo

I love PBS Idea Channel, but sometimes the provoking ideas proposed stretch my comfort zone. They are supposed to, of course, and I bet they are delighted when they provoke deeper thought and conversation. Last night my son and I were debating the logic and reasoning of this video. We didn’t agree. And I wasn’t agreeing with the video. Today the conversation extended to the staff breakroom, with the conversation ranging across the value of libraries, human intellect’s contribution to knowledge, and Google as a prosthetic device to extend the mind. Time to bring it here, in case anyone else has missed it.

When I was in grad school, this conversation tended to focus on the differences between information and knowledge, and how these impacted on intellectual property issues as well as collection policy decisions and organization of library holdings. But it took other forms as well. One evening, my friend Kenn Harper was over for dinner with his fiancé Lucy, and we were trying to decide what music to play. He started talking about some book (he couldn’t remember the author or title) that had really excited him and which had this amazing music with it, and … I said, “Wait a sec.” Then I dashed off to my bookshelves, grabbed a copy of Ursula LeGuin’s then new book, Always Coming Home, and said, “Is this it?” He pressed his lips together, then said, “That’s exactly what I mean. How do you DO that?! How do you just know what I’m thinking of when I don’t know?” I smiled and shrugged, and we put the cassette tape on to play.

The video starts with an example very much like this. Friends hanging around, trying to remember something, but instead of reaching for a person, they reach for Google, and yes, they find what they couldn’t recall. A few years back, roughly 20 years after Kenn and I were having dinner, my now grown-up daughter had just discovered Amazon, and logged on to buy a specific book. Amazon has always suggested titles based on your past purchases, and as soon as she logged on they suggested that she buy the book she had logged in to purchase. Her eyes got all big and round, and she said, “How do they DO that?!”

What is the difference between a person like a librarian who has a rich and complex knowledge of a field in which you want to know more, who can, through the intricate complexities of that awareness and knowledge and their experience and knowledge of you, reach for just the right thing you need, and tools like Google and Amazon and Netflix that suggest what you might want based on your past behavior? Books and libraries used to be referred to as “warehouses of knowledge.

Books, The Warehouse of Knowledge (1944)

What is the difference between a library of printed books, of film and music, of comics and videogames and the hardware to support them; what is the difference between these, and the quick Google at your fingertips? Is Google a warehouse of knowledge? Mike Rugnetta says, “Duh!” Is Google a library? Is a bookstore a library? Is Amazon? Is Netflix? Is it a library if you have to pay money? Some libraries DO charge money for access, or for permission to borrow the books.

I came back to my grad school days where we talked about critical differences between information and knowledge, and then the differences between data and information, and the differences between knowledge and wisdom. You’ve probably already seen or heard of the DIKW pyramid or hierarchy. Here’s an illustration of it by AJ Cann.

DIKW

Some expand it by including “understanding” between “knowledge” and “wisdom” (which I rather like), and I particularly like this richly detailed version by Nick Webb.

From Data to Wisdom

Several folk have, like Nick, added concepts to lead from each step to the next, to help us understand how we get from one to the next.

David Gurteen:
Data (+ Context) > Information (+ Meaning) > Knowledge (+ Insight) > Wisdom

David McCandless:
Data (Visualization) > Information (Design) > Knowledge (Mapping) > Wisdom (???)

e-guestbook: David McCandless

I’d like to insert the concept of people. Things can gather data, but cannot make meaning of it. Numbers and letters are, of themselves, without meaning, and it takes both context and purpose to assemble them. Still, a child can speak in sentences. Some might argue that the existence of spam poetry (aka Spoetry) contradicts this, but the argument has been made that while the machine might have generated the spam, it doesn’t become a poem until a human mind recognizes the existence of meaning within that particular random arrangement of words. N. Ingebritson at Infoengineering points out that data is always correct, but information can be in error, and that, “You can’t currently store knowledge in anything other than a brain, because a brain connects it all together.”

I find it somewhat ironic that over the past few centuries, the conversation around “knowledge” (what we know and how we know) has remained relatively constant, while that around “wisdom” peaked in the early 1800s, and has declined as discussion of data and information have soared. I hope this is an example of a pendulum swinging, and that as we collectively understand data and information better, we will again grow interested in understanding and wisdom.

Ngram viewer: DIKW / DIKUW

So, if things can generate data, and children can generate information, how do we get to wisdom? Somewhere along the line, I propose we must insert experience, and acknowledge librarians and teachers/mentors as intermediaries of experience.

What's the phrase? "People ask me things they can Google"

The difference between Google as a warehouse of knowledge and the library as a warehouse of knowledge is the LIBRARIAN. I argue that Google cannot be a library until it has its own librarians who serve the Google-used public as librarians serve as an interface to the contents of their libraries. And in that sense, no, Mike Rugnetta, Google is not a library. Not yet.

Archiving the History of Our Profession: MeSH 50th Anniversary

Medical Library

Many of you know that part of the reason for the decline in my online presence is that I’ve been hard at work for several months now on a few book chapters, the most recent pair about searching for information to support evidence-based practice in dentistry. The one I’ve trying so hard to finish right now is on searching PubMed. As part of this, I am trying to give a little bit of background on where PubMed comes from as part of trying to explain why certain features work the way they do now, sort of how evolution and early constraints shapes the later versions of the tool. For this, even though I rarely spend more than a sentence or two on any specific piece of history, I am searching for articles and content to validate dates of when I think things happened, and similar sorts of proof to support what I’m saying. God forbid I cite the evidence, eh? (Yes, that’s sarcasm, or irony, or something along those lines.

At one point last week I was searching for information about the origins of MeSH, and was delighted to discover a link on the MeSH homepage for their online exhibit about the 50th anniversary celebrations for MeSH.

MeSH 50th Anniversary

Unfortunately, it was a dead link, which surprised me. When did the history of MeSH and the 50th anniversary celebration become “grey literature”, or rather simply lost? Well, last week. I sent a quick email off to Customer Service at NLM on July 31st, and received a reply the following day. To my complete surprise, the reply stated that the link was to old content that had been deleted from the site, and the link to the content should have also been deleted. “The link was meant to be removed but we have the contents as pdf files.” True to their words, they promptly deleted the link from the page.

MeSH 50th Anniversary

I asked why, and was told it is part of their policy to keep web content fresh and lively, as is true of so many other organizations.

web content policy (currency OR current OR lively OR fresh or “up to date”)
Web content policies

Alright, yes, that is a good idea in general, and it is official policy, and there are good reasons for it, but … but … but … how on earth is someone supposed to know that such content ever existed, or that it was preserved as PDFs? How would someone discover that it existed to even ask for a copy? Don’t we want copies of information of interest about the history and origins and evolution of our profession? MeSH is so inextricably intertwined with medical librarianship that it seems to me essential to preserve not only this information but also ready access to it, DISCOVERABLE access.

I understand that the persons involved are simply doing their job the best they can and as they have been instructed to do it. I am not blaming them (which is why I am not giving any names). I see this as a symptom of a broader problem at a higher level. Policies of that sort are usually developed by and for the workflows of “webmasters, IT staff, and those program officials responsible for web content.” Personally, I find it shocking, perhaps even distressing, that a library, especially a library the caliber of the National Library of Medicine would choose to honor a well-intended policy that diminishes access to useful public information rather attempt to inform policy makers of the impact and to try to inject some insight and perspective into the policy reformation process. But that is my perspective, and possibly only mine.

The official guidelines from the National Archives and Records Administration (NARA) do include policies that allow for the retention of information as well as for the disposal of information, or, as they put it, “records that have been destroyed.” Those NARA guidelines focus on trust, risk, mitigating risk, and responsibility. The guidelines include answers to such questions as “Does managing agency web sites as Federal records mean that I must keep all page changes for a long time?” That was a particularly interesting answer, also.

Q: Does managing agency web sites as Federal records mean that I must keep all page changes for a long time?
A: No. As MANAGING WEB RECORDS and SCHEDULING WEB RECORDS discuss in greater detail, your agency business needs, including the risks to the agency programs and mission should the information not be available, are the major factors in determining how long you need to keep those pages. Your web site schedule specifies the length of time you need to keep pages.

There are some very useful thoughts and considerations in these documents, even though they were drafted in January 2005 and have not been thoroughly updated since them. [ASIDE: There was an addendum issued in 2010 on "recent web technologies" including blogs and wikis, which expires October 31, 2013, so hopefully we'll soon see something more in keeping with the current state of web technologies and trends.] The part that most interested me right now was how they archive content (they recommend “spiders” and “web snapshots”), and how they determine what content should be archived.

NARA Guidance on Scheduling Web Records: How are retention periods for web site-related records determined? http://www.archives.gov/records-mgmt/policy/managing-web-records-scheduling.html#retention

“[T]he agency needs to assess how long the information will be needed to satisfy business needs and mitigate risk, taking into account Government accountability and the protection of legal rights. If specific web content is available in places other than the web, consider whether the existence of the information in other records affects the retention needs for the web records. In the case of information unique to the web site, the web version is the only recordkeeping copy.” NARA Guidance on Scheduling Web Records.

Note especially, “the case of information unique to the web site.” The question becomes how valuable and relevant that information is over time, how worth preservation. There is other information about the history of MeSH. There is the valuable but brief introduction from NLM, duplicated in the MeSH Preface, and a 2006 variant of the same text.

NLM: History of MeSH: http://www.nlm.nih.gov/mesh/intro_hist.html

As part of the 50th anniversary celebration, there is an online copy of the first volume of MeSH, which I discovered only through a brief blogpost from the NNLM Southeastern/Atlantic Region.

Regarding web-searchable content of the actual 50th celebration itself, we are primarily reduced to the video from the presentation (lacking the transcript, and not located in YouTube for sharing or embedding); an announcement in the NLM Technical Bulletin; and myriad blogposts referencing the now defunct website.

Robert Braude. MeSH at 50 – 50th Anniversary of Medical Subject Headings (The impact of the Medical Subject Headings (MeSH) vocabulary on access to biomedical information.) http://videocast.nih.gov/Summary.asp?File=16292

50th Anniversary Medical Subject Headings (MeSH®) Event. November 02, 2010 [posted]. NLM Technical Bulletin 2010 NOVEMBER–DECEMBER No. 377.
http://www.nlm.nih.gov/pubs/techbull/nd10/nd10_mesh_50th_anniv.html

I did search in Google for the actual title of Dr. Braude’s presentation (“MeSH at 50 or Should It Now Join AARP”), and found one hit, from a chemical industry page evidently created by scraping the web through a spider and still online.

Screen Shot 2013-08-04 at 1.52.30 PM

Oh. Dear. He did such a splendid presentation, and now we can’t even find out that he had done it.

“As with other agency records, most web records do not warrant permanent retention and should be scheduled for disposal in accordance with the guidance provided above. In instances where NARA determines that a site or portions of a site has long-term historical value, NARA will work with the creating agency to develop procedures to preserve the records and provide for their transfer to the National Archives.” NARA Guidance on Scheduling Web Records.

Was the MeSH 50th Anniversary content archived with NARA? I don’t know. I don’t know how to find out. I did have an idea for how to find what was missing. If I can’t find the government’s information from the actual government, if I can’t trust the government to keep available the information I need or want from them, I look in the Internet Archive. The Archive is not a government organization. They are “a 501(c)(3) non-profit that was founded to build an Internet library.” What happens when the Archive runs out of money, I don’t know. I will say the idea scares me.

Meanwhile, I was able to find an archived copy of the main page before the link was deleted.

Archive.org: NLM: MeSH: http://web.archive.org/web/20130727172025/http://www.nlm.nih.gov/mesh/

Why couldn’t I find this in Google? Because the Archive is part of what is known as the Internet’s “Deep Web.” The Deep Web is, according to Wikipedia, “The Deep Web (also called the Deepnet, the Invisible Web, the Darknet, the Undernet or the hidden Web) is World Wide Web content that is not part of the Surface Web, which is indexed by standard search engines.” Most websites that require you to perform a search to get to their content would be considered part of the Deep Web, especially if the search results do not generate a persistent URL. If the results do generate a permanent URL, then it is possible (although challenging) to create a resource that maps those links to the deep content of the site in a space which is searchable by Google.

That’s what I’m going to do now, for the web pages for the MeSH 50th anniversary. I’m doing this because I want to be able to find it again, more easily than it was for me this time. I’m doing this because Robert Braude said important things about MeSH and how it got here, because he gave faces and lively personalities to the people behind this famously dull and detailed masterwork, because he (and the rest of the 50th celebration site) gave a context that I have never seen anywhere else. Here are just a few of my favorite quotes from Braude’s presentation.


“When I received the invitation to speak today on the history of MeSH, I was truly shocked. I wondered how the History of Medicine Division dredged up my name but then I realized — I was NOW history.”

* * *

“Rather I choose to focus on the antecedents of MeSH, the fertile soil prepared by so many from which MeSH grew. These antecedents, shrouded in the dim mist of history, are, I think, of more interest. Revealing them, I believe, will give us a stronger sense of how far back the chain of MeSH development goes.”

* * *

(Quoting Janet Doe) “It is, moreover, economically unsound for all of our individual libraries to be trying to do for themselves what can only be adequately done by experts drudging away tirelessly for years on a fully representative collection of material.”

* * *

“Why MeSH; what were the forces shaping the effort to create such a resource?”

* * *

“Stan Jablonski, esteemed author of the Illustrated dictionary of eponymic syndromes and diseases and their synonyms and the Dictionary of medical acronyms & abbreviations was there, towering above us all physically as well as intellectually. Coffee breaks with Stan were a treat and an education. And I will never forget having to turn in my used pencils at the end of the day to Gus Gillespie since funds were just as tight then as they are now.”

* * *

“One of the problems with the constant changes to MeSH was searching backwards in time, for one needed to know what heading had been previously used.”

* * *

“The issue raised by Claudius Mayer was that there was no way a single authority list for cataloging monographs and indexing the periodical literature could be developed. Wrong Claudius, Dr. Rogers did it with MeSH.”


Here are the links to the Archive’s copy of the MeSH 50th Anniersary pages that have been lost to Google search.

Celebrating MeSH: 50 years of Medical Subject Headings
http://web.archive.org/web/20120715011340/http://www.nlm.nih.gov/mesh/mesh_at_50/mesh_at_50.html

50 Years of Medical Subject Headings:
Past, Present, and Future Impact on Biomedical Information
Robert M. Braude, MLS, PhD, AHIP, FMLA, FACMI
Thursday, November 18, 2010
http://web.archive.org/web/20120727164057/http://www.nlm.nih.gov/mesh/mesh_at_50/presentation.html

Faces of MeSH:
http://web.archive.org/web/20120727205432/https://www.nlm.nih.gov/mesh/mesh_at_50/faces_of_mesh.html

Milestones in MeSH:
http://web.archive.org/web/20120727164124/http://www.nlm.nih.gov/mesh/mesh_at_50/timeline.html

History of MeSH:
http://web.archive.org/web/20120727164125/http://www.nlm.nih.gov/mesh/mesh_at_50/history_of_mesh.html

Publications about MeSH
http://web.archive.org/web/20120727164126/http://www.nlm.nih.gov/mesh/mesh_at_50/publications_about_mesh.html

Hashtags for Twitter Cancer Communities

Top ten hashtags associated with #cancer

Librarians have been geeking out, or grossing out, over hashtags since they first appeared. Some of the conversation has been about concerns over ‘allowing’ the public to define their own metadata, while much of it has been the flip side of trying to engage the public in generating metadata for library online collections, and thus enriching access and awareness for those collections.

Naturally, the general public simply move forward with creating new hashtags for their own purposes, largely unaware of the conversations and concerns of professionals in the area of metadata. This is as it should be. The idea of a Folksonomy, a.k.a. folk taxonomy, as originated by Thomas Vanderwal centers around the social aspect — real people, real folk, coming up with language that means something to them to describe content that matters to them with ideas that matter to them. Meaning.

I could go on about this for a long time, but today I need to focus on a particular aspect of this dynamic — a shift from folk+taxonomy to folk+ontology. Folkology? Folk ontology? Folktology? A little bit of digging leads me to folktology (non-scholarly) or tagontology (scholarly) as preferred terms for this, both of which are used roughly the same amount.

In social media, one of the greatest strengths has been the power to create community where none existed before, to connect and empower those who may otherwise be isolated. The most prominent examples of this in healthcare have been the emerging communities around chronic conditions (such as diabetes), marginalized communities (such as facial difference and transgendered), and conditions that create isolation as part of the lifestyle or treatment of the condition (such as mobility disorders, many types of cancer, and any condition expected to be fatal).

Taking cancers as an example, there is the immediate problem of the ambiguity of language. In the image at the head of this post, the hashtag #cancer is shown to be most often associated with the Zodiac, not with healthcare. This makes that term itself less useful for healthcare uses.

Symplur Healthcare Hashtag Project 07082013
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/

In the Symplur Healthcare Hashtag Project, a crowdsourced collection of hashtags in health, there are over 2500 hashtags total, with over 100 (n=133 07/08/2013) related to cancer. These range from disease tags, to events, to scheduled chats, and more. When people enter a new tag, they cannot do so anonymously, and the tags are reviewed before being added to the database. The tag donor is also asked to define the tag category at time of submission. Non-event tags must be able to show that they are used by multiple people. All of this makes the quality of the collection superior to most hashtag databases on the web. (I often wish there was something similar for science hashtags, or information technology hashtags, etc. I also often wish that the project content was routinely archived for posterity through a neutral organization, such as a library, but that is another conversation to have.)

The problem? Not one of those 133 hashtags on cancer is the hashtag #cancer. Of course, it would be really messy to try to separate the zodiac hashtags from the health hashtags, so I can understand why it has been avoided. However, this problem of the commonly used hashtag being missing from the database occurs fairly regularly. It is a not unexpected problem with crowdsourced information collections. Here’s another example. According to Symplur, the preferred hashtag for ovarian cancer is #ovariancancer. If you actually prowl around Twitter, there is an enormous variety of tags used, with the most common being #ovca. The #ovca content is not currently being captured, tracked, or archived in the project database. I just this morning submitted the #ovca tag when I noticed it was lacking. Hopefully, it may be active by the time this post goes live, but the content in it would be sparse and would lack history.

Here are the top, ie. most common, cancer hashtags, according to Symplur.

Cancer:
#BCSM; #BladderCancer; #BowelCancer; #BrainCancer; #BreastCancer; #CancerChat; #CancerFreeMe; #CancerSurvivors; #CervicalCancer; #Chemo; #ChildhoodCancer; #ColonCancer; #Leukemia; #LiverCancer; #LungCancer; #Lyphoma; #Melanoma; #Mesothelioma; #OralCancer; #OvarianCancer; #PancreaticCancer; #PediatricCancer; #ProstateCancer; #SkinCancer; #TesticularCancer; #XMRV
Symplur: The Healthcare Hashtag Project: http://www.symplur.com/healthcare-hashtags/diseases/

You’ll notice a wide variety of types of tags, with a general approach tending toward long tags that include the full words. In actual practice on Twitter, this is the reverse of standard practice, in which tags are kept short to minimize the number of characters used. Many of these tags, like #OvarianCancer, have shorter alternatives that are also used heavily (ie. #ovca). For breast cancer, both forms appear in the Symplur list: #BreastCancer and #BCSM. #BrCa, however, was missing, just like #OvCa. I submitted it, also.

You see the problem? Problems, actually. Part of it is discovery of the terms used, part of it is the actual terms used, and part of it is the community working to ‘manage’ creation, use, and adoption of the terms. Enter @SubatomicDoc, a.k.a. Dr. Matthew Katz. Matthew is a radiation oncologist who has been active in a couple different Twitter cancer communities, most notably #BCSM (which he adopted) and #LCSM (which he initiated). #BCSM stands for breast cancer social media, and #LCSM stands for lung cancer social media. The process of coming up with a better hashtag for lung cancer, gathering a community around it, and developing traction and adoption, got him thinking. What about other cancers?

Matthew sent me a direct message last week about this. He’d been thinking, and had created a rough draft of what he is calling a folksonomy, but which is really more of an ontology, uh, folktology or tag-ontology. We went back and forth several times, thinking about metadata design, automated sorting in computers, common usage, structuring subconcepts, distinguishing proposed tags from currently used tags in other domains, and various other ideas of how to best structure these in a way that would be useful, practical, and true to the concepts and communities. Matthew released the initial draft at the ASCO site last week, with a substantial model integrating proposed and existing Twitter hashtags around cancer experiences and communities.

Matthew S. Katz, MD. Hashtag Folksonomy for Cancer Communities on Twitter. ASCO Connection: 03 Jul 2013 9:08 AM http://connection.asco.org/Commentary/Article/ID/3590/Hashtag-Folksonomy-for-Cancer-Communities-on-Twitter.aspx

Since then there has been a lot of reaction, with people asking for MORE. Frankly, that is not a reaction I think either of us expected. There are refinements and extensions evolving from the communities. It is becoming a richer and broader conversation. I’d like to see more medical librarians engage with this. I am no metadata specialist, and would love to see someone get interested who is more expert than I am with metadata.

One of the extensions that was proposed through Twitter conversations around this is the idea of secondary tags to connect common cancer issues with specific cancer communities. I’d roughed out a list of some of those issues for my book chapter for online cancer resources and search strategies, back in the MLA Guide.

CAM, biopsy, staging, caregiving, home care, chemotherapy, cancer medications, side effects, clinical trials, fatigue, new diagnosis, nutrition, diet, pain, prevention, lifestyle, second opinions, sexuality, survival, and talking about cancer to different audiences.
MLA Guide: Free Samples: Sample Chapters: Volume Two: Diseases and Disorders: Part IV: Cancers, by P. F. Anderson http://www-personal.umich.edu/~pfa/mlaguide/free/cancers.html#issues

One of the ideas Matthew is talking about is how to come up with a strategy for creating new hashtags that would open this up to others, what are the criteria or best practices for creating new hashtags. I did some thinking on this for my Enriching Scholarship workshop on Twitter Hashtags for Science.

Twitter Hashtags

Twitter hashtags mindmap: http://www.mindmeister.com/270101756/twitter-hashtags-by-pf-anderson

I should make a separate post about the model I developed for thinking through best practices of creating new hashtags, but I’ll just put a placeholder here. The acronym is LUDDITE, which stands for:

Length
Unique
Distinct
Decipherable
Indelible
Time
Enterprise

LUDDITE Model for Hashtag Creation

These overlap in many key points with Matthew’s criteria in his ASCO post, however he includes critical points of working specifically for cancer and healthcare communities.

“It is disease-based;
It helps patients with similar diagnoses learn and share rather than be isolated by the cancer experience;
It is designed to make information more easily accessible;
It is unique enough to be distinguished from other topics online;
Brevity is key to allow more content/conversation, especially with Twitter.”

So, that’s as far as we’ve gotten, but we’d love YOU to join the conversation and thoughts around this. Please put comments about the hashtag model at Matthew’s post, and comments about the process here. Thank you so much!


UPDATE July 15, 2013.

An important followup post from Matthew (@subatomicdoc) is now up.

Cancer Hashtags: High Time or Half-Baked?
Matthew S. Katz, MD
15 Jul 2013 10:09 AM http://connection.asco.org/Commentary/Article/ID/3599/Cancer-Hashtags-High-Time-or-Half-Baked.aspx

ECigs: ETech Meets Public Health Again (Part Two)

[For information on why I've been missing-in-action here, please see this post at my personal blog: http://mhistoire.wordpress.com/2013/05/25/breathing-in-memory-of-rose-ann-broussard-cooper-anderson/ I expect to be back in business next week.]


So, in Part One, the eCig conversation was largely framed through health and legislative perspectives, with concerns hooked substantially on potential use by minors and young adults. In part two, I want to dig a little deeper into some of these issues, and spin off in new directions, mostly workplace use, more about minors, and issues of DIY and unintended uses of e-cigs.

I keep saying how complicated is the issue of electronic cigarettes. This tweet illustrates part of that.

The American Cancer Society (ACS) is one of the organizations most strongly advising caution with respect to e-cigs, and perceived as “the opposition” by the e-cig and vaping communities. Obviously, given that at least one person at their event was using an e-cig, this is not a topic with complete consensus, but it is also close enough to consensus to raise eyebrows and warrant comment. The issues are further complicated by the ACS accepting donations from e-cig manufacturers.

Similarly, despite the prolific and prominent vitriol from the vaping community regarding any suggestion that e-cigs warrant further research or concern or caution, there are elements of that community willing to work with the government and professional medical organizations on exactly those areas.

Growing Electronic Cigarette Manufacturer “Welcomes” FDA’s “Reasonable Regulation” Of Category:
http://www.prnewswire.com/news-releases/growing-electronic-cigarette-manufacturer-welcomes-fdas-reasonable-regulation-of-category-204121851.html

Given that e-cigs are an emerging technological alternative to the issue of smoking and that smoking in public spaces and the workplace has been a major issue over the past few decades, it’s no real surprise that there are guidelines and suggestions being created to advise employers about best practices for managing e-cigs in the workplace. Given that my own campus, University of Michigan, only recently went smoke-free (July 1, 2011), and that several of my friends are still struggling to make the switch, I expect that this is an issue worthy of local attention.

What employers need to know about electronic cigarettes? Fact Sheet, September 2011. (pdf)
http://www.businessgrouphealth.org/pub/f311fb03-2354-d714-51a9-0b67bb588666
Main points:
Quick Facts About E-Cigarettes
• Not an FDA-approved tobacco cessation device.
• Contain nicotine and detectable levels of known carcinogens and toxic chemicals.
• Look very similar to regular cigarettes (especially from a distance).
• Manufactured using inconsistent or non-existent quality control processes.
Actions for Employers
• Determine whether the use of e-cigarettes is allowed in their jurisdictions, including in the workplace.
• Understand whether unions, works councils, or other laws can raise barriers to implementing workplace
policies regulating e-cigarettes.
• Stay informed on any new laws and emerging scientific evidence regarding e-cigarettes.

Please note the date on those tips, and that they haven’t been updated, although the conversation is far from over!

Sullum, Jacob. Boston Bans E-Cigarettes in Workplaces, Just Because. Dec. 2, 2011 http://reason.com/blog/2011/12/02/boston-bans-e-cigarettes-in-workplaces-f

American Society for Quality: Should e-Cigarettes Be Allowed in the Workplace? April 15, 2013 http://asq.org/qualitynews/qnt/execute/displaySetup?newsID=15801

One marketing firm addressed a sort of a case study of why one life insurance firm in Britain banned e-cigs at work, arguing against each of the points.


Should electric cigarettes be allowed in the workplace http://www.slideshare.net/jackwillis2005/ppt-should-e-cigarettes-be-allowed-in-the-workplace

Here are a couple links with pro and con information about the Standard Life policy decision. A major point seems to be the psychology of e-cig use, that because of their resemblance to real cigarettes they give the message that smoking is a good thing or at least permissible. I am not aware of any research into this assumption, although there is substantial evidence on the related concept of candy cigarettes.

The Scotsman: Standard Life bans employees from smoking electronic cigarettes at work (2012): http://www.scotsman.com/the-scotsman/health/standard-life-bans-employees-from-smoking-electronic-cigarettes-at-work-1-2124568

Daily Mail: Safety fears over electronic cigarettes because they are ‘unclean’ and unregulated: http://www.dailymail.co.uk/health/article-2129550/Safety-fears-electronic-cigarettes-unclean-unregulated.html

And a couple pieces about the psychological impact candy cigarettes. Consider, though, that the research on candy cigarettes is looking explicitly at the impact on children, not adults.

Klein JD, Forehand B, Oliveri J, Patterson CJ, Kupersmidt JB, Strecher V. Candy cigarettes: do they encourage children’s smoking? Pediatrics. 1992 Jan;89(1):27-31. http://www.ncbi.nlm.nih.gov/pubmed/1728016

Klein JD, Clair SS. Do candy cigarettes encourage young people to smoke? BMJ. 2000 Aug 5;321(7257):362-5. http://www.ncbi.nlm.nih.gov/pubmed/10926600

Klein JD, Thomas RK, Sutter EJ. History of childhood candy cigarette use is associated with tobacco smoking by adults. Prev Med. 2007 Jul;45(1):26-30. Epub 2007 Apr 24. http://www.ncbi.nlm.nih.gov/pubmed/17532370

Back to the American Cancer Society, and the issue of minors having access to e-cigs.

Anti-THR Lies and related topics: Who leads the fight against banning e-cigarette sales to minors? Guess again: it is the American Cancer Society: http://antithrlies.com/2013/04/25/who-leads-the-fight-against-banning-e-cigarette-sales-to-minors/

As with everything surrounding the e-cig controversies, it’s never straightforward, and there are always multiple views with value. This tweet was in response to my Part One blogpost on e-cigs.

The links highlight the work of Dr. Michael Siegel, Professor, Department of Community Health Sciences, Boston University School of Public Health.

Dr. Siegel:
“I do not question the need to balance the benefits of enhancing smoking cessation among adult smokers with the costs of youth beginning to use this nicotine-containing product. But show me at least one youth using the product before you call for a ban. This recommendation makes a mockery out of the idea of science-based or evidence-based policy making in tobacco control.”
The Rest of the Story: Tobacco News Analysis and Commentary: American Legacy Foundation Sounds Alarm About Electronic Cigarette Use Among Young People, Calling for a Ban on Flavored E-Cigarettes, But Fails to Document a Single Youth Using These Products http://tobaccoanalysis.blogspot.com/2013/04/american-legacy-foundation-sounds-alarm.html

In response to:

““While most candy-flavors – such as chocolate, vanilla and peach – were banned in 2009 from cigarettes, flavored tobacco products like cigars, hookah, snus and e-cigarettes persist in more than 45 flavors and are still legally on the market,” said Andrea Villanti, PhD, MPH, CHES, Research Investigator for Legacy. “These products can be just as appealing to young people as flavored cigarettes, offering a product appearing to be more like candy to those most at-risk of becoming lifelong tobacco users,” she added.”
FDA Should Extend Ban on Flavors to Other Products to Protect Young People, April 3, 2013 http://legacyforhealth.org/newsroom/press-releases/flavored-tobacco-continues-to-play-a-role-in-tobacco-use-among-young-adults

“Overall, 18.5% of tobacco users report using flavored products, and dual use of menthol and flavored product use ranged from 1% (nicotine products) to 72% (chewing tobacco). In a multivariable model controlling for menthol use, younger adults were more likely to use flavored tobacco products (OR=1.89, 95% CI=1.14, 3.11), and those with a high school education had decreased use of flavored products (OR=0.56; 95% CI=0.32, 0.97). Differences in use may be due to the continued targeted advertising of flavored products to young adults and minorities. Those most likely to use flavored products are also those most at risk of developing established tobacco-use patterns that persist through their lifetime.”
Villanti AC, Richardson A, Vallone DM, Rath JM. Flavored Tobacco Product Use Among U.S. Young Adults. American Journal of Preventive Medicine 44(4):388-391, April 2013 http://www.ajpmonline.org/article/S0749-3797(12)00939-7/abstract

Dr. Siegel:
“But I don’t think most anti-smoking groups or advocates care about the actual evidence. They’ve already made up their minds. Vaping looks too much like smoking. So forget about the fact that not a single nonsmoking youth could be found who has even tried the product. The advocates must continue to follow the party line and warn about the danger of electronic cigarettes as a gateway to nicotine addiction. Never mind that the gateway just doesn’t exist.”
The Rest of the Story: Tobacco News Analysis and Commentary: New Study on Electronic Cigarette Use Among Youth Fails to Find a Single Nonsmoking Youth Who Has Even Tried an Electronic Cigarette: http://tobaccoanalysis.blogspot.com/2013/01/new-study-on-electronic-cigarette-use.html

In response to:

“E-cigarettes are battery-powered devices that look like cigarettes and deliver a nicotine vapor to the user. They are widely advertised as technologically advanced and healthier alternatives to tobacco cigarettes using youth-relevant appeals such as celebrity endorsements, trendy/fashionable imagery, and fruit, candy, and alcohol flavors [2], [3]. E-cigarettes are widely available online and in shopping mall kiosks, which may result in a disproportionate reach to teens, who spend much of their free time online and in shopping malls.”
Grana, Rachel A. Electronic Cigarettes: A New Nicotine Gateway? Journal of Adolescent Health 52(2):135-136, February 2013.
http://www.jahonline.org/article/S1054-139X(12)00736-7/fulltext
[NOTE: Check out the bibliography]

“Only two participants (< 1%) had previously tried e-cigarettes. Among those who had not tried e-cigarettes, most (67%) had heard of them. Awareness was higher among older and non-Hispanic adolescents. Nearly 1 in 5 (18%) participants were willing to try either a plain or flavored e-cigarette, but willingness to try plain versus flavored varieties did not differ. Smokers were more willing to try any e-cigarette than nonsmokers (74% vs. 13%; OR 10.25, 95% CI 2.88, 36.46). Nonsmokers who had more negative beliefs about the typical smoker were less willing to try e-cigarettes (OR .58, 95% CI .43, .79)."
Pepper JK , Reiter PL , McRee A-L , Cameron LD , Gilkey MB , Brewer NT . Adolescent males' awareness of and willingness to try electronic cigarettes. J Adolesc Health . 2013;52:144–150. http://www.jahonline.org/article/S1054-139X(12)00409-0/abstract

Wow. All smart people, working in or from the peer-reviewed literature, but with varying interpretations. For more information about flavors in e-cigs, check out these e-cig review and information sites.

Vapor Rater: http://www.vaporrater.com
Vapour Trails: http://www.vapourtrails.tv

The first thing I saw that actually sparked a moment of interest in e-cigs for me personally was the idea that you can make your own at home. I’m not a smoker, but I’m also not much of a drinker. I am, however, addicted to canning, pickling, and otherwise preserving produce and home goods. I go so far as to even make my own fruit shrubs as beverage mixes for my friends who do drink, even though I don’t partake. If you could convince me that e-cigs were safe and healthy and all that, you could tempt me to want to learn how to mix the vaping liquid for my friends, even if I don’t use it myself.

RTS Vapes: Lab Safety when Mixing Liquid Nicotine: http://rtsvapes.blogspot.com/2012/09/lab-safety-when-mixing-liquid-nicotine.html

A brief detour down memory lane. When I was in high school I remember vividly a change in what and who was “cool” between sophomore and junior years. During freshman and sophomore years, the cool kids, the influencers, were those who snuck off into corners to make out and have sex. In junior and senior years it was no longer sex but drugs that was cool, and a lot of the smartest kids in school adopted drugs, creating and using intellect, technology, and creativity to explore this “counter-culture” area. In chemistry class, one of the top students used the chem lab to gold-plate a baby marijuana leaf into a pickle fork. A pair of National Merit Scholars broke into the high school academic system to do a statistical analysis comparing the IQs of known street drug users compared to street drug ‘virgins’ among the student population, with the drug users ‘proven’ to have the highest IQs. There was a perception that drugs weren’t just cool, but smart. I don’t know, but it would not surprise me to find that high school students today are also inquisitive and creative with exploring new technologies that allow them to buck the status quo. It is with that in mind that I read these next tweets.


Portable Vaporizer – Marijuana Pot Herbal Portable Vaporizers http://www.youtube.com/watch?v=vs6AjEXcOok

For the record, I am a supporter of the legalization of marijuana, and it makes sense that if e-cigs are safer to want to extend those health benefits to persons who smoke anything recreationally. I’m not opposed to e-cigs, either, but do think there are benefits to information, education, and appropriate legislation. There are really two main questions. One, this is a new technology, and we don’t know that much about it. E-cigs were invented in 2004, and there simply hasn’t been time to fully research the technical, physical, and psychological health impacts of use. That is a problem for most new and emerging technologies, and we don’t have a solution for that at this point. The other main question is really about minors. So, the argument from Dr. Siegel is that youth don’t use e-cigs. Are you sure?

Buzzwords of the Day: Biohacking, DIYbio, and Quantified Self

Convenient title generator

One of the things I’ve noticed in my emerging technologies explorations is that buzzwords are super important in identifying trends and the evolution of concepts over time. Often the same idea will reappear over decades, but with different terms applied. Those in the field know it is a rebranding of the idea, but people outside don’t know this and may very well believe it is a new idea or that two related terms are distinct rather than overlapping. I started thinking maybe it would be helpful to others if I occasionally have brief blogposts highlighting specific terms I’m tracking in the e-tech or em-tech world. This would be the first post of this sort.

I’ve been increasingly involved with personal genomics over the past year. It started with being a subject of a campus research study, and has only become more important.

Personal Genomes: what can I do with my data?, by lablogga http://www.slideshare.net/lablogga/personal-genomes-what-can-i-do-with-my-data

I’m finding that it isn’t enough. When you start getting information that makes a HUGE difference in the quality of your life, you want more. You start to realize that good can become better. Even without aspiring to “ideal” or “perfect”, you realize that so much more is possible. In digging for more options, I found first the quantified self movement (in which I am stumbling around trying to find my way), then DIYbio, and finally biohacking. What all of these have in common is generating data and performing experiments to improve your own personal health and quality of life. They are closely related to the earlier terms of mobile health and e-health, but extend and focus those concepts. Between these three terms — biohacking, DIYbio, and quantified self — lines blur. There is substantial overlap as well as distinct differences between these terms, the technologies they use, their goals and methodologies. These are just a few slidedecks to give you quick introductions to these concepts. I hope to blog more about them in the future, as I truly believe these are very important, and even essential to the future of healthcare.

Biohacking

Biohacking refers to the practice of engaging biology with the hacker ethic.[1] Biohacking encompasses a wide spectrum of practices and movements ranging from Grinders who design and install DIY body-enhancements such as magnetic implants to DIY biologists who conduct at-home gene sequencing. http://en.wikipedia.org/wiki/Biohacking


Quantified Self & Biohacking, by Teemu Arina. http://www.slideshare.net/infe/quantified-self-biohacking

DIYbio

“As molecular tools get cheaper, and the know-how for using them more widely distributed, I think we’re going to see a renaissance in science. The peculiar feature of this renaissance is that its going to take place outside of “science proper”, away from the universities which dominate now, and funded out-of-pocket by enthusiasts without PhDs.” Science without scientists, DIYbio.org http://diybio.org/2008/08/22/science-without-scientists/


Singularity University July 2010: DIYbio Demo Workshop, by Mac Cowell http://www.slideshare.net/100ideas/singularity-university-july-2010-diybio-demo-workshop


On Experimenting with Others. The Rise of D-I-W-O Science, by Eli Gentry. http://www.slideshare.net/erigentry/gentry-laser-7-mar11

Quantified Self

“The Quantified Self is a movement to incorporate technology into data acquisition on aspects of a person’s daily life in terms of inputs (e.g. food consumed, quality of surrounding air), states (e.g. mood, arousal, blood oxygen levels), and performance (mental and physical). Such self-monitoring and self-sensing, which combines wearable sensors (EEG, ECG, video, etc.) and wearable computing, is also known as lifelogging or sousveillance. Other names for using self-tracking data to improve daily functioning are “self-tracking”, “auto-analytics”, “body hacking” and “self-quantifying”.” http://en.wikipedia.org/wiki/Quantified_Self


Self tracking, Sensors, and mHealth: Trends and Opportunities, by C Torgan http://www.slideshare.net/ctorgan/self-tracking-sensors-and-mhealth-trends-and-opportunities

Stack O’ Books — Sources on Transparency and Privacy, All

Stack O' Books

I’m both a writer and a librarian, and I’m having trouble deciding whether to call this an index or a Table of Contents after the fact, or a collection, or something else, but the gist of the idea is along those lines. Here are links to all the posts in the Stack O’ Books series all in one place. At the bottom of the post, I also list the books by publication date, and alphabetical by author.

Part One: http://etechlib.wordpress.com/2013/03/11/stack-o-books-sources-on-transparency-and-privacy-part-one/

The Anarchist in the Library (2004) by Siva Vaidhyanathan.
As the Future Catches You (2000, 2001), by Juan Enriquez.

Part Two: http://etechlib.wordpress.com/2013/03/12/stack-o-books-sources-on-transparency-and-privacy-part-two/

The Best Science Writing Online 2012, by Bora Zikovic and Jennifer Ouellette.
Decentralization, Sketches Toward a Rational Theory (1980), by Manfred Kochen and Karl W. Deutsch.

Part Three: http://etechlib.wordpress.com/2013/03/14/stack-o-books-sources-on-transparency-and-privacy-part-three/

Endless Frontier (1997), by G. Pascal Zachary.
Extreme Trust (2012), by Don Peppers and Martha Rogers.

Part Four: http://etechlib.wordpress.com/2013/03/20/stack-o-books-sources-on-transparency-and-privacy-part-four/

The Filter Bubble (2011), by Eli Pariser.
Growth of Knowledge (1967), edited by Manfred Kochen.

Part Five: http://etechlib.wordpress.com/2013/03/25/stack-o-books-sources-on-transparency-and-privacy-part-five/

Information for Action (1975), by Manfred Kochen.
Information for the Community (1976), by Manfred Kochen.

Part Six: http://etechlib.wordpress.com/2013/03/27/stack-o-books-sources-on-transparency-and-privacy-part-six/

Invisible Colleges (1972), by Diana Crane.
My Stroke of Insight (2006), by Dr. Jill Bolte Taylor.

Part Seven: http://etechlib.wordpress.com/2013/03/28/stack-o-books-sources-on-transparency-and-privacy-part-seven/

Science Since Babylon (1961), by Derek John DeSolla Price
The Pleasure of Finding Things Out (1999), by Richard Feynman.

Part Eight: http://etechlib.wordpress.com/2013/03/29/stack-o-books-sources-on-transparency-and-privacy-part-eight/

Six Degrees (2003), by Dunan J. Watts.
The Transparent Society (1998), by David Brin.

In Sequence by Publication Date

1961: Science Since Babylon, by Derek John DeSolla Price
1967: Growth of Knowledge, edited by Manfred Kochen.
1972: Invisible Colleges, by Diana Crane.
1975: Information for Action, by Manfred Kochen.
1976: Information for the Community, by Manfred Kochen.
1980: Decentralization, Sketches Toward a Rational Theory, by Manfred Kochen and Karl W. Deutsch.
1997: Endless Frontier, by G. Pascal Zachary.
1998: The Transparent Society, by David Brin.
1999: The Pleasure of Finding Things Out, by Richard Feynman.
2000: As the Future Catches You, by Juan Enriquez.
2003: Six Degrees, by Dunan J. Watts.
2004: The Anarchist in the Library by Siva Vaidhyanathan.
2006: My Stroke of Insight, by Dr. Jill Bolte Taylor.
2011: The Filter Bubble, by Eli Pariser.
2012: Extreme Trust, by Don Peppers and Martha Rogers.
2013: The Best Science Writing Online 2012, by Bora Zikovic and Jennifer Ouellette.

Alphabetical by Author

Brin, David. The Transparent Society (1998).
Crane, Diana. Invisible Colleges (1972).
De Solla Price, Derek John. Science Since Babylon (1961).
Enriquez, Juan. As the Future Catches You (2000, 2001).
Feynman, Richard. The Pleasure of Finding Things Out (1999).
Kochen, Manfred; Deutsch, Karl W. Decentralization, Sketches Toward a Rational Theory (1980).
Kochen, Manfred. Growth of Knowledge (1967).
Kochen, Manfred. Information for Action (1975).
Kochen, Manfred. Information for the Community (1976).
Pariser, Eli. The Filter Bubble (2011).
Peppers, Don; Rogers, Martha. Extreme Trust (2012)
Taylor, Jill Bolte. My Stroke of Insight (2006).
Vaidhyanathan, Siva. The Anarchist in the Library (2004).
Watts, Duncan J. Six Degrees (2003).
Zachary, G. Pascal. Endless Frontier (1997).
Zikovic, Bora; Ouellette, Jennifer. The Best Science Writing Online 2012.