Hashtags of the Week (HOTW): National Women’s Health Week and Prophylactic Mastectomies (Week of May 13, 2013)

Originally posted at THL Blog hashtags-of-the-week-hotw-national-womens-health-week-week-of-may-13-2013 by Chris Bulin, @Arduanne.

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While I was preparing last week’s post, I saw some tweets about National Women’s Health Week this week. I thought that was quite appropriate considering the week started with Mother’s Day. Mother’s Day itself was full of trials and triumphs as noted in these tweets:

THIS RT @archivesnext: Why isn’t New Orleans Mother’s Day parade shooting a ‘national tragedy’?bit.ly/YMbVBO via @twttimes

— Ayla Stein (@TheStacksCat) May 16, 2013

MT @umhealthsystem: Marie Janus, home for Mother’s Day after becoming our 2000th liver transplant recipient: umhealth.me/10tFx3p

— UniversityofMichigan (@umich) May 13, 2013

From there, I looked to #NationalWomensHealthWeek and #NWHW to find the most interesting tweets about Women’s Health.

Happy National Women’s Health Week! at.wh.gov/l3Q5H, twitter.com/whitehouse/sta…

— The White House (@whitehouse) May 15, 2013

@alzheimers_nih Ah, yes, asking for help! Sometimes it seems stressful, but is esp important for caregivers! womenshealth.gov/publications/o… #NWHW

— womenshealth.gov (@womenshealth) May 16, 2013

RT @aauw: Remember when a Harvard doctor suggested that educating women would cause infertility? flip.it/q9jmS #NWHW

— Melissa Harris-Perry (@MHarrisPerry) May 14, 2013

Initiative on #Diabetes & Women’s Health: working on quality of care for women at risk for gestational diabetes. go.usa.gov/T7rx

— CDCChronic (@CDCChronic) May 16, 2013

Ladies, remember to take care of your health, nutrition and well being!! #NationalWomensHealthWeek #NWHW twitter.com/AllenbyDerm/st…

— Allenby Dermatology (@AllenbyDerm) May 16, 2013

Exciting developments in helping preserve chemo patients’ fertility #NationalWomensHealthWeekvia @naturenews nature.com/news/drug-save…

— Ovuline (@ovuline) May 16, 2013

Take control of your health this #NationalWomensHealthWeek “Why don’t patients behave more like consumers?” tedmed.com/talks/show?id=… #TEDMED

— APTA Women’s Health (@womens_PT) May 13, 2013

Wondering how the health care law improves women’s health? #NationalWomensHealthWeek INFOGRAPHIC (via @womenshealth) twitter.com/PPSNE/status/3…

— PlannedParenthoodSNE (@PPSNE) May 15, 2013

I don’t know if Angelina Jolie decided to hold her press conference because it was National Women’s Health Week, or because she just felt is was the right time, but the revelation of her prophylactic double mastectomy certainly had people talking about women’s health issues. It started with an outpouring of support and well wishes for Jolie and evolved to include conversations surrounding Supreme Court cases, economic and healthcare realities, and patent law. You can follow these conversations on #brca and #breastcancer.

Angelina Jolie: “I can tell my children that they don’t need to fear they will lose me to breast cancer.” nyti.ms/10wszSl

— The New York Times (@nytimes) May 14, 2013

The battle over BRCA1: @cbsandrew on the court case looming behind Angelina Jolie’s op-ed theatln.tc/13xsovp

— The Atlantic (@TheAtlantic) May 15, 2013

Some doctors worried that Angelina Jolie’s disclosure could be misinterpreted by other women nyti.ms/10oViww

— The New York Times (@nytimes) May 15, 2013

#SciAmBlogs on Jolie and breast cancer today: bit.ly/140ppLh and bit.ly/140qxyy and bit.ly/13iHy4f (so far)

— Bora Zivkovic (@BoraZ) May 15, 2013

Learn more about #BRCA 1 & 2 mutations: We’ve extended free streaming of IN THE FAMILY until 5/26 to.pbs.org/16XKlDR @pbs

— POV (@povdocs) May 16, 2013

#myriad‘s breast cancer gene test now costs $4000 – bit.ly/YV7YNj many people will die because of this outrageous patent #brca

— Glyn Moody (@glynmoody) May 15, 2013

Two of my relatives (maternal grandmother & aunt) have had breast cancer. So my DNA might be violating Myriad’s patent as we speak. #BRCA

— Katie Mack (@AstroKatie) May 14, 2013

Finally, I came across a reference to #WD2013 which is the annual Women Deliver conference. This global conference is being held in Kuala Lumpur May 28-30, 2013. While you may not be able to attend in person, they will have online streaming content. The conference focuses on the “health and empowerment of girls and women” through political and economic engagement, particularly as it relates to maternal and newborn health and wellness.

When a mother dies, her kids are 10x more likely to die w/in 2 yrs of her death. We’re working to change this bit.ly/13xB8ld #WD2013

— Jhpiego (@Jhpiego) May 16, 2013

Interested in #WD2013 but can’t get to Malaysia? Never fear! Watch online w/ @womendeliver‘s live webcasts. Schedule: ow.ly/l4cef

— GirlsGlobe (@GirlsGlobe) May 16, 2013

Guest Post: Enriching Scholarship 2013: Tech Talk

I’m trying to catch up with promised blogposts for the various Enriching Scholarship sessions I coordinated or in which I participated. Lucky for me, Shannon Murphy attended one of the sessions and blogged about it so beautifully that I am just reposting here, with her very kind permission and a very small number of copy-edits. You can see the original post at:

ES 2013 Tech and Trends: http://aquillam.wordpress.com/2013/05/08/es-2013-tech-and-trends/

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ETech guru Patricia Anderson presented. As usual, there are tons of resources.

The mind map for this is available at http://www.mindmeister.com/289740657/tech-talk-2013#

Members of the UM community may want to sign up for the Cool Toys Conversations email group in MCommunity. You can also follow the Cool Toys blog http://cooltoysu.wordpress.com/ or the ETechLib blog http://etechlib.wordpress.com/

The talk follows the mindmap, starting from the upper right and working around clockwise.

What is emerging tech?

It’s what’s new and hot and relavant and important.

New Media Consortium’s Horizon report is a good resource, and is what they usually focus on in the Cool Toys email group. Find out more about the project at http://www.nmc.org/horizon-project. Download the higher ed report in English from http://www.nmc.org/pdf/2013-horizon-report-HE.pdf

The future is here (at UM)

Examples – last year’s ES poster winners http://www.crlt.umich.edu/node/514

Would have liked to have this year’s winners too. Our instructors are doing amazing things with today’s technology, and we’re developing things that can be next year’s tech. http://www.crlt.umich.edu/tipwinners2013

Issues

Many of these are issues we face year after year. For example, do students with the money for laptops or tablets to bring to class have an advantage over those who can’t afford portable tech? Should we be introducing students to high end computers and software if they won’t have access to those things in the jobs they get when they leave here? What competencies do the students actually need in the future?

How we answer those questions now will determine what higher ed looks like and whether or not we survive.

Resources and past years

The Resources bubble provides a lot of resources for exploring further.

The 2011 and 2012 Tech Trends are provided so you can compare where we were a year or two ago, and where we are now.

Tech Trends 2013

“My Take”

Wearable tech generated a lot of chatter on the cool toys email group http://pinterest.com/rosefirerising/wearable-tech/. However, what was is the Cool Toys chatter was not the same as what was in the horizon report. The Horizon report focused on things like the much hyped Google Glass, and smart watches like Pebble. But there are all sorts of things, like biometric tattoos that can warn diabetics if their blood sugar is too low, or buttons for your jacket that detect if you’ve had too much to drink. Also, some slightly disturbing options, like the tattoo that vibrates when you got a phone call. (This tattoo is not MRI safe. And what do you do when the technology changes??) Wearable tech can be big too, like the scarf with sensors so it you crash on your bike, it turns into an airbag bike helmet, or the power suit designed for soldiers but usable by paraplegics to allow them to walk again.

Patricia also discussed the power of technologies like Personal genomics, Personalized medicine, Quantified self and Biohacking. These let the individual learn more about themselves and their health through things like developing a personal genetic profile, tracking exercise goals or finding correlations between symptoms and diet. Lots of data helps the user and their doctor diagnose problems more quickly and treat them more effectively.

3D printing was also a big item. These bring their own set of questions and issues. What will it mean if everyone had the ability to print whatever they want? WILL everyone be able to do this, or will this be another thing that separates groups (those who can afford it and those who can’t). Are there things you shouldn’t be allowed to print, and how would a ‘bad’ be enforced? http://io9.com/you-can-now-3d-print-a-fully-operational-handgun-493142303 Bioprinting is also an emerging technology, with things like replacement bones and ears already possible.

Related to the 3D printing is the Maker Culture. Here in A2 we have MakerWorks http://www.maker-works.com/ and All Hands maker space http://www.allhandsactive.com/. There’s also the Maker Faire Detroit each year at The Henry Ford http://www.makerfairedetroit.com/. Groups like http://www.thingiverse.com/ make it easy for designers and makers to make their designs available to other makers, and to anyone with a 3D printer.

Gartner Hype Cycle

http://www.infoq.com/resource/news/2012/08/Gartner-Hype-Cycle-2012/en/resources/hype1.png

Handy for checking on what might be overhyped right now (like 3D printing, social analytics, and gamification), under-hyped, what’s likely to be a hot topic next year, and what we are seeing turn into practical, usable, and realistic tech (and as a slow typist, I’m rather glad to see speech recognition finally becoming useful!)

10 Breakthrough Technologies 2013

http://www.technologyreview.com/featuredstory/513981/introduction-to-the-10-breakthrough-technologies-of-2013/

A list by the MIT Technology Review.

See the list at http://www.technologyreview.com/lists/breakthrough-technologies/2013/

Again, wearable tech like smart watches and 3D printing apear on the list.

Also on the list are memory implants. While intended for people with cognitive dysfunction, could these be used by “normal” people who want a better memory.

Deep (machine) learning – AI is closer to reality. This have some unintended consequences too. For example, programs were designed to make spam look more like normal human speech, so it could get around the spam filters. However, it was still mostly gibberish. Poets found some of it interesting and started using the “creative” content from the computers to generate Spam Poetry (is that plagiarism?)

Big data from cheap phones also has some potentially profound implications. In Kenya, a database that used text messages from users to track the location of prescription medications eventually lead to (democratic) political upheaval. The Boston Marathon bomber was caught largely due to cell phone video. These open up privacy questions. According to David Brin, that can be OK as long as there is data equality. However, we will face serious problems if one side is transparent and the other is not. http://www.davidbrin.com/transparentsociety.html

Your Health – A Lot of It Is About Asking Questions. The Right Questions.

During Sunday’s frantically paced #HCSM Twitter chat, one of the topics that came up was the problem of getting help and learning when you have a new diagnosis. That is when your brain usually goes into some sort of frozen state, and you forget important things, like that you already knew some of this, or how to spell the words, or to ask how to spell the name of the thing you have. You know, things you would think of if you weren’t sitting there stunned.

I had two recommendations. 1) Ask a librarian for help, ASAP, especially a medical librarian. 2) Look for suggestions or lists of questions you should be asking, just to make sure you don’t miss something important. Here are some resources and tips for both.

#1: ASK A LIBRARIAN

A lot of people replied that it isn’t as easy as I think to ask a librarian. Not because they were embarrassed about asking, but because they couldn’t find a librarian. Oh. Really?!? Oh, wow.

So first thing I did was post a couple of links on where and how to find medical librarians. Now, of course, you can always ask a healthcare professional, it is just I assume that you’ve already tried that, or that your appointment was too short, or that you didn’t think of the right questions then. Libraries are great for just dropping in and asking for help.

National Network of Libraries of Medicine: Members: http://nnlm.gov/members/

Medical Library Association: For Health Consumers: http://mlanet.org/resources/consumr_index.html#2

MedlinePlus: Find a Library: http://www.nlm.nih.gov/medlineplus/libraries.html

healthfinder: Find Services Near You: http://healthfinder.gov/FindServices/

Library of Congress: NLS Reference Directories: Library Resources for the Blind and Physically Handicapped 2009: http://www.loc.gov/nls/reference/directories/resources.html

Ed.gov: Library Search: http://nces.ed.gov/surveys/libraries/librarysearch/

Worldcat: Libraries: http://www.worldcat.org/libraries

Internet Public Library: Library Locator: http://www.ipl.org/div/liblocator/

The next concern was along the lines of “What about finding a librarian at 3:00AM when I can’t sleep because I’m so frantically worried about everything that’s happening right now? Librarians are hard to find at 3AM!”

Believe it or not, there is a solution for this, too.

Internet Public Library: Ask Us: http://www.ipl.org/div/askus/
“This service runs 24 hours/day, 7 days/week during most of the year.”

Yes, really.

#2: FINDING THE RIGHT QUESTIONS

When you are first diagnosed, there can be this sense of urgency, a need to find out everything you need to know, except … where do you start? There is so much to learn! What do you need to know first? What questions should you be asking?

For most diagnoses, someone has written up a list of questions for exactly this. The problem is first, thinking to ask what questions to ask, and second, finding these lists of questions. It is kind of like being granted three wishes in a fairy tale, with the rule “No wishing for more wishes!” Far too often, people find out later questions they wish they had asked at the beginning.

There are a few search strategies I’ve found helpful over the years for finding these. You can ask a librarian for help, but you can also do your own searches. For each of these examples, try adding in the name of your diagnosis to the search strategy given below. Try changing the word “doctor” to the type of health professional you are seeing — nurse, or therapist might be other choices.

See what lists of questions you find. Then write down the questions you like, and make a list. Order the questions by what’s most important, because sometimes there won’t be time for all of the questions.

(1)
“ask * doctor”

(2)
“question to ask” doctor

(3)
“ask * questions” doctor

(4)
“asking * questions” doctor

(5)
(“frequently asked questions” OR FAQs OR FAQ)

Remember these tips from the Agency for Healthcare Research and Quality — Questions ARE the Answer.

AHRQ: Questions are the Answer: http://www.ahrq.gov/legacy/questions/index.html

They have ten standard questions, and a tool to build and print your own custom question list. Here are the ten basic ones.

1. What is the test for?
2. How many times have you done this procedure?
3. When will I get the results?
4. Why do I need this treatment?
5. Are there any alternatives?
6. What are the possible complications?
7. Which hospital is best for my needs?
8. How do you spell the name of that drug?
9. Are there any side effects?
10. Will this medicine interact with medicines that I’m already taking?

At the Movies: Think Local (TEDxUofM mini, Part One)

The TEDxUofM event last Friday was fabulous. I don’t know how long it will be before they have the videos up, so I thought I’d try to find some other videos by the same people, just to whet your appetite.

OLIVER UBERTI

TEDxNASA – Oliver Uberti – Smash The Design Button http://www.youtube.com/watch?v=cE4D7OsIzuk

“The design process begins and ends with research — so he shares an office with a human skeleton. Oliver Uberti is a visual journalist and designer who dabbles in maps, infographics and words. He is a Design Editor at National Geographic magazine. On a given day at Geographic, Uberti says he may be found painting with crude oil, charting man’s migration from Africa, drawing Stonehenge, counting jelly beans or directing a photo shoot of highway litter. He’s drawn to images that make him feel something — joy, sorrow, surprise or wonder. Uberti writes a blog titled The Process, the stories behind National Geographic’s award-winning art, maps and designs. Here he answers the oft-asked question, “How did they do that?”"

Friday he had an incredible data visualization he’d created focusing on peak points of creativity throughout the human lifespan. I can’t seem to stop telling people about it. I want a copy!

DAN MORSE

The Beet Box: http://www.youtube.com/watch?v=wO-9PTdG1-Q

“Inspired by an internship in Gabon, Africa, in 2011, Dan Morse and Kay Feker collaborated in the hopes of focusing on food and youth empowerment to create The Beet Box. Joined by fellow University of Michigan students, Alex Pearlman and Kendra Hall, the group raised funds to create The Beet Box in the hopes of starting a health food revolution. They had a vision; now they needed the product.” Beet Box: Food for the Future: http://liveinthelead.com/features/02/beet-box-food-for-the-future/

Dan gave a wonderful talk about meeting unexpected trials and not giving up. Me, I loved the slides, the beautiful pictures of beets.

STERLING SPEIRN

Sterling K. Speirn, W.K. Kellogg Foundation President and CE http://www.youtube.com/watch?v=9TTxDVprvo4

“Ultimately, we want to make a positive difference by improving opportunities for children, families and communities and still meet our financial investment goals,” says Sterling Speirn, president and chief executive officer of the Foundation. “Mission driven investing is another tool that we can use to leverage our resources. Among other things, it allows us to preserve and grow our financial resources, while realizing greater social change by being able leverage our endowment to help vulnerable children.” Mission Driven Investing: Overview http://mdi.wkkf.org/our-mission/overview.aspx

Sterling inspired and provoked with alternative views of what philanthropy can be, could be, and should be; a view of philanthropy as an active and purposeful somewhat heroic activity.

SHARON POMERANTZ

Novelist Sharon Pomerantz discusses her inspiration for RICH BOY http://www.youtube.com/watch?v=f0ijuWoJNLk

“[W]riter Sharon Pomerantz (author of RICH BOY, published by Hachette/Twelve) describes her experience supporting herself as a shoe shine girl– revealing what a man’s shoes say about him, and describing how her labors influenced her future as a writer.”

MIKE BARWIS

Barwis Methods Training — Brock Mealer Walks Without Canes! http://www.youtube.com/watch?v=oie8ou_ViMg

“Constrained to a wheelchair for two years, in October 2009, Brock visited his brother at the University of Michigan where he was playing football. After an impromptu meeting with the coaching staff, strength and conditioning coach Mike Barwis invited Brock to train with them. According to the Associated Press, although Barwis had no previous experience training paraplegics, Brock took up the offer to attempt rehabilitation in the athletic training center…. Brock and Barwis set a goal. Not only was Brock going to walk again, unsupported, but he would lead the Michigan football team onto the stadium in their season opener against Connecticut.” Brock Mealer, Ohio Car Crash Victim, Defies Doctors To Walk Again (VIDEO) http://www.huffingtonpost.com/2012/10/02/brock-mealer-_n_1934050.html

You should have heard the roar from the crowd, the thunderous applause, the entire audience leaping to their feet en masse when Mike finished talking and Brock walked out on stage.

GINA ATHENA ULYSSE

Gina Athena Ulysse: http://www.youtube.com/watch?v=nL5xSjsT_uY

“Gina Athena Ulysse, In spoken-word performance of: Because When God is Too Busy: Haiti, me and the World, 2007″

Gina was one of my very favorite performers and speakers of the event. She brought such vision and passion to her performance, such clarity to both her voice and her story.

NOTES

TEDxUofM Untapped_ Voices: http://news.tedxuofm.com/post/45988920365/tedxuofm-untapped-voices

Hashtags of the Week (HOTW): World Autism Day (Week of April 1, 2013)

Originally posted at THL Blog http://thlibrary.wordpress.com/2013/04/05/hashtags-of-the-week-hotw-week-of-april-1-2013/ by Chris Bulin, @Arduanne.

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This has been a whirlwind of a week. We started with April Fools Day, which seemed to involve a lot of cats and alternative search methods this year. April is Autism Awareness Acceptance Month and Tuesday was World Autism Day. Tuesday was also the groundbreaking announcement of the BRAIN Initiative that was outlined yesterday on the THL Blog.

I decided to focus on the autism portion of the week, although, as you’ll see from the tweets, the other two are related. I started with the most obvious hashtag #autism. I focused on research and personal stories about autism. As you can see, Twitter delivered.

A Facebook friend points out that April Fool’s can be rough on kids with #ADHD, #SPD, and #autism, who rely on the predictable and stable.

— ADDitudeMag (@ADDitudeMag) April 1, 2013

Thanks for all the good work by @ambitiousautism This is my son (and my hero!) Ethan.. #AutismIs #WAAD twitpic.com/cgvovi

— Trevor Skinner (@TrevorSkinner) April 4, 2013

Has #autism touched your life? Tell us about your experience for @ajstream Monday ahead of World Autism Day. bit.ly/16cePQd

— Malika Bilal (@mmbilal) April 1, 2013

Acceptance Is Belonging by Amy Sequenzia || Autism Acceptance Month ow.ly/jHNmB

— autselfadvocacy (@autselfadvocacy) April 3, 2013

Very pleased to hear Obama will invest in research projects to help find cures for diseases like #alzheimers #autism abcn.ws/16tHan9

— Sen. Robert Menendez (@SenatorMenendez) April 2, 2013

HHS Secretary Kathleen Sebelius discusses National #Autism Awareness Month & NIH research commitment: 1.usa.gov/12ao6vE

— Mental Health NIMH (@NIMHgov) April 4, 2013

Embodiment and sense-making in autism. goo.gl/bGNi3 #autism #psychology #neuroscience

— J.-François Gariépy (@JFGariepy) April 4, 2013

VIDEO: When one twin has #autism ow.ly/jDGL1 #ajstream

— The Stream (@AJStream) April 1, 2013

Useful reference page on #autism in adults from Research Autism. Share the awareness.researchautism.net/pages/autism_a…

— Autism Care UK (@autismcareuk) April 4, 2013

The Autism Spectrum | Books for Kids, Parents, and Teachers ow.ly/jG64M Extra Helping #waad

— SchoolLibraryJournal (@sljournal) April 2, 2013

I clicked through into the #neuroscience and #psychology streams to see what scientists and researchers were talking about this week as well.

USA- #Autism linked to genetic change in instable genome regions science.psu.edu/news-and-event…#healthinnovations #neuroscience #neuropsychiatry

— Michelle Petersen (@shelleypetersen) April 4, 2013

Blog discusses @bmc_series‘ #research: 91% of animal studies on #autism are flawed ow.ly/jHnim via @medicaldailycom #neuroscience

— BioMed Central (@BioMedCentral) April 3, 2013

The risk of autism is not increased by ‘too many vaccines too soon’ dlvr.it/38fjYk #neuroscience

— Bernardo R. Japón (@brjapon) March 29, 2013

A #Therapist‘s Experiences in #Autism by Richard Howlin @psych2morrowmag psychologytomorrowmagazine.com/autism-and-cre…#psychology

— Antonio Ho (@Lawyer_A_Ho) April 4, 2013

White House w00t! Support for Innovative Neuroscience Research

In case you missed it, the White House announced this week their new initiative to fund research focusing on neuroscience innovation.

“The BRAIN Initiative — short for Brain Research through Advancing Innovative Neurotechnologies — builds on the President’s State of the Union call for historic investments in research and development to fuel the innovation, job creation, and economic growth that together create a thriving middle class.” BRAIN Initiative Challenges Researchers to Unlock Mysteries of Human Mind http://www.whitehouse.gov/blog/2013/04/02/brain-initiative-challenges-researchers-unlock-mysteries-human-mind

Here is a brief introduction to the project from NIH Director, Francis Crick.

On The Clock: The BRAIN Initiative http://www.youtube.com/watch?v=slQ8ELULNP0

Shout out for President Obama for the Bold Plan to Map the Human #Brain tinyurl.com/bu8ye8f via @mashable” @hcldr #HCLDR #Medicine

— Elin Silveous (@ElinSilveous) April 3, 2013

President Obama Speaks on the BRAIN Initiative and American Innovation http://www.youtube.com/watch?v=uJuxLDRsSQc

“So there is this enormous mystery waiting to be unlocked, and the BRAIN Initiative will change that by giving scientists the tools they need to get a dynamic picture of the brain in action and better understand how we think and how we learn and how we remember. And that knowledge could be — will be — transformative.” Remarks by the President on the BRAIN Initiative and American Innovation http://www.whitehouse.gov/the-press-office/2013/04/02/remarks-president-brain-initiative-and-american-innovation

Here are a few useful resources.

BRAIN Initiative Infographic: http://www.whitehouse.gov/infographics/brain-initiative (PDF)

White House Blog: BRAIN Initiative Challenges Researchers to Unlock Mysteries of Human Mind http://www.whitehouse.gov/blog/2013/04/02/brain-initiative-challenges-researchers-unlock-mysteries-human-mind

White House Blog: President Obama Launches the “BRAIN” Initiative (all the links in one place) http://www.whitehouse.gov/blog/2013/04/02/president-obama-launches-brain-initiative

I was particularly impressed by the dialog on Twitter that fed into the live streamed question and answer session. Unfortunately, many on Twitter didn’t realize the answers to the questions were in the video stream and were not on Twitter. I have to agree that the process of utilizing Twitter was not well managed for this event.

I see all the BRAIN drain #WHChat questions for @whitehouse @whitehouseostp @nihdirector @darpa in my feed, but no answers. #WHtwitterfail

— Michael Tomasson (@MTomasson) April 2, 2013

That said, I will post here some of the questions which most intrigued me, with the video for the Q&A below.

What is the expected makeup for the #WHBrain Advisory Committee? Will patient groups be involved in goal setting? #WHChat

— Morgan Romine (@mhromine) April 2, 2013

How can #patient communities be involved? And what patient-relevant outcomes can they expect? When? #BRAIN #WHChat #medicalresearch

— FasterCures (@FasterCures) April 2, 2013

@whlive #WHChat How do you plan to engage the general public in the #BRAIN Initiative? This is of growing importance as we move forward.

— Amy Robinson (@amyleerobinson) April 2, 2013

RT @ecast_network: Who will represent the public re trust, societal implications BEFORE research begins? @nihdirector#BRAIN #WHChat

— scicheer (@scicheer) April 2, 2013

#WHChat #BRAINInitiative Do you think this will be our generation’s space race?

— Chris Bulin (@Arduanne) April 2, 2013

Not remotely enough $$$ RT @arduanne: #WHChat #BRAINInitiative Do you think this will be our generation’s space race?

— Drug Monkey (@drugmonkeyblog) April 2, 2013

Can you please address the concern that there will be a “BRAIN drain” of funds away from other reaearch areas. #WHChat @whitehouseostp

— Michael Tomasson (@MTomasson) April 2, 2013

The data generated by the #BRAINInititive will be made available as #OpenData, per @nihdirector #WHChat #OpenAccess #hcsm

— TheHealthPolicyGroup (@healthpolicygrp) April 2, 2013

+1 RT @jbkinney: Good post @emckiernan13 buff.ly/Z3cL9a #brainmap needs a lot more transparency. Public info on project is thin.

— Open Science Fedn (@openscience) April 2, 2013

#WHChat #BRAINInitiative Will there be any regulation on pharmaceutical implications?If there’s breakthrough, can patents be ltd?

— Chris Bulin (@Arduanne) April 2, 2013

Been following news on Brain Activity Map? Did you know many players hold patents related to project? wp.me/p2emGs-bA #brainmap

— Erin McKiernan (@emckiernan13) April 1, 2013

#WHChat can you anticipate near term consumer technology advances that might spin off this initiative? #brainmap

— Guy Eakin (@guyeakin) April 2, 2013

Speaking of #BrainInitiative, let’s talk about Neurologic #MusicTherapy y’all! Effective treatment for TBI, Parkinson’s, and Alzheimer’s.

— Brooke (@brookpluse) April 2, 2013

#HCLDR Obama announced today $100MM in NIH research on how the brain works. How great a role will music play in that?

— Ross D. Martin (@RossMartin) April 3, 2013

#WHChat the retina is an extension of the brain, is it included in te scope of the brain map

— Guy Eakin (@guyeakin) April 2, 2013

can you comment on the so-called “brain observatories” that have been discussed by some scientists involved? #WHChat @whitehouseostp

— Jason Pipkin (@jipkin) April 2, 2013

“where creativity & innovation needed, one of the worst things scientific community can do is…pursue a consensus plan” @mbeisen #brainmap

— Leonid Kruglyak (@leonidkruglyak) March 31, 2013

Promising to fix human diseases with $100M #BRAINI proposal will backfire. Wish someone knew how to sell basic science.

— Michael S Carroll (@nucAmbiguous) April 2, 2013

For more information, please see:

NIH: Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative: http://www.nih.gov/science/brain/

Open for Questions: The BRAIN Initiative http://www.youtube.com/watch?v=wNLjJi7ZSl4

And ….. closing with a gag. Gotta read the credits, folks!

Insert joke about Obama = Chicago = dead people voting = Zombies = funding for studying BRAINS. whitehouse.gov/blog/2013/04/0…#WHbrain

— Adam Shapiro (@TryingBiology) April 4, 2013

Hashtags of the Week (HOTW): Naming and Shaming (Week of March 25, 2013)

First posted at the THL Blog by Chris Bulin (@Arduane): http://thlibrary.wordpress.com/2013/03/29/hashtags-of-the-week-hotw-naming-and-shaming-week-of-march-25-2013/

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I was amazed (and a little horrified) by the number of stories having to do with ethics in science over the last week. As a student at the School of Information, we heard quite a bit about the incident of public shaming and resulting fallout from PyCon (a conference about the Python programming language). There was a lot of scuttlebutt and some serious discussion about the role of sexism in STEM. On the heels of this came the “revelation” that the I F*cking Love Science (IFLS) blog was run by *gasp* a woman! Twitter was absolutely flooded with posts about #science, #ethics and #sexism.

The ethics of naming and shaming. This is the best high-level piece I’ve seen on this subject. blogs.scientificamerican.com/doing-good-sci…

— ashe dryden (@ashedryden) March 25, 2013

The Biggest Problem in Technology (re: #donglegate) newyorker.com/online/blogs/n… via @newyorker

— Nilofer Merchant (@nilofer) March 24, 2013

This post is also how many of us in the #HR community view the #Donglegate debacle – by John V. Petersen codebetter.com/johnvpetersen/…

— Karla Porter (@karla_porter) March 23, 2013

This morning, I spoke on CBS News about the plight of women in science, with the creator of the blog “I f*** love science.”

— Dr. Michio Kaku (@michiokaku) March 27, 2013

To the apparent shock of some social media users, girls can be quite good at science. How sad is this in 2013 #sexism guardian.co.uk/science/us-new…

— Don Higgins (@SerfCity) March 22, 2013

Around the same time these issues were being discussed, the European Molecular Biology Laboratory at Heidelberg published a paper which released the full genomic sequencing of a strain of commonly used HeLa cells, as noted by Forbes. This brought up questions about personal genomics and privacy. You can follow this conversation on the following hashtags #HeLa, #privacy, #bioethics, #genomics.

“Immortal Life of Henrietta Lacks, The Sequel” my OpEd about the sequencing of the #HeLa genome #privacy #bioethics nytimes.com/2013/03/24/opi…

— Rebecca Skloot (@RebeccaSkloot) March 23, 2013

Researchers Can’t Promise Genetic Research Participants Anonymity. #Bioethics Bulletin post by Debra Mathews j.mp/11Hf3lw #HeLa

— Berman Institute(@bermaninstitute) March 27, 2013

Let’s revisit #ethics again. Go above & beyond for consent. Why it matters, what it means to African-Americans #HeLa blogs.scientificamerican.com/urban-scientis…

— DNLee (@DNLee5) March 24, 2013

#HeLa Cell Line #Genome Sequencing Raises #Ethical/#Privacy Concerns by @nextgenseek nextgenseek.com/2013/03/hela-c… #Genomics #Genetics #Bioethics

— Toni Segovia (@toni_segovia) March 24, 2013

And, to add a strange twist to our ethics discussions this week, Australian scientists have been able to resurrect an extinct frog as part of the Lazarus Project, while researchers in the US attempt to bring back the carrier pigeon. Both of these #deextinction initiatives have gotten Twitter talking about woolly mammoths and Jurassic Park.

A mammoth or an elephant hybrid? on.natgeo.com/Yr7c8b #DeExtinction

— National Geographic (@NatGeo) March 22, 2013

@kmkubo We just followed up on the topic of #deextinction with our own feature today, in case you’re interested: bit.ly/WRIE7W

— GLP (@GeneticLiteracy) March 26, 2013

“The Conservation Perspective on ‘De-extinction’,” an opinion from #StewartBrand: huff.to/15KXzBq via @huffpostgreen #DeExtinction

— Revive & Restore (@Revive_Restore) March 25, 2013

Monday’s 2nd hour: The science and ethics of bringing extinct animals back to life thekojonnamdishow.org/shows/2013-03-…

— The Kojo Nnamdi Show (@kojoshow) March 22, 2013

SCIENCE: They’ve now got a name for it – ‘De-extinction’ – and a wish-list of the first 24 extinct animals to be… fb.me/14dWONV4G

— Mute Planet (@Tessercraft) March 25, 2013

Stack O’ Books — Sources on Transparency and Privacy. Part Eight

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Back in the 1950s, Kochen (a mathematician) and Pool (a political scientist) were the first to think about it but couldn’t find a solution without computers. Milgram (a psychologist), aided by White (a physicist-sociologist) and followed by Bernard (an anthropologist) and Killworth (an oceanographer), then attacked the problem empirically but couldn’t explain how it actually worked. Thirty years later, Steve and I (mathematicians) turned the problem into one about networks generally but failed to see its algorithmic component, leaving that door for Jon (a computer scientist) to open. Jon, in turn, left the door open for Mark (a physicist), Peter (a mathematician), and me (now a sociologist of sorts) to walk through and pick up the solution that now seems to have been lying there all along. It’s been a long trail, almost fifty years, and now we think we finally understand the problem, it seems like someone ought to have figured it out long ago. But it had to happen this way. (pp. 160-161)

Six Degrees, by Dunan J. Watts.

Comment: I admit, part of the reason I selected this quote was because it mentioned Fred, and I wanted to show that I’m not the only person who thinks he did some important work. More importantly, however, is the way in which this wonderful story illustrates the essential importance of boundary-spanning and collaboration in knowledge discovery. I spend a fair amount of time on this in the chapter, and while this particular quote didn’t fit into the story I was trying to craft, it supports it nicely, and I wish I could have included it.

Duncan Watts and Dalton Conley discuss Six Degrees of Separation http://www.youtube.com/watch?v=pFK1bpQwHF4

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This new “immune system” may be imperfect … but at least we started noticing some dangers, like ozone depletion and species extinction, long before the trends grew too severe. Passionate advocates and antagonists swarm around each problem, hollering so loud we can’t ignore the peril, even when we squeeze our eyes shut and hope it goes away. This trend is especially important given society’s growing complexity and the rapid pace of change. Science and technology must progress swiftly, in order to offer any hope of solving the world’s problems. Still, with every advance, new questions and dilemmas burst forth to confound even a culture filled with large numbers of college graduates. As the recent furor over human cloning showed, it takes time for people to listen, argue among themselves, overreact, learn some more, and finally start making the sort of practical, as we go decisions that may (with luck) take us into the twenty-first century in fairly decent shape. (pp. 142-143)

The irony here is that our relative immunity against fallacy is in large part carried out via the adversarial tug and push of countless indignant, righteous, and often narrow-minded individuals, many of whome would be anything but tolerant or democratically inclined if by some magic or intrigue they ever achieved coercive power. The service they provide for the rest of us — the calm, relatively contented majority — cannot be overstated. (p. 143)

The Transparent Society, by David Brin.

Comment: For me, choosing quotes from this book is almost impossible. My first copy is studded with little shreds of torn paper marking places where David said something especially important. I agonized over the quotes to include in the book chapter, because I had limited space and many voices to include. I was trying so hard to give equal space to both sides of the debate, when what I wanted to do was just hand people copies of David’s book and make them read it. It was so hard for me to think of anything unique that I could bring to the conversation. I tried anyway.

The first time I met David was when he was on tour for this important book, having fought with his reluctant publishers to get it out in print. He spoke on campus in a rather unusual and elegant room in the UM Law School, a room which reminded me of a church in some ways. We chatted afterwards, and have stayed in touch over the years through various social media.

This was the most important book for me while I was working on my chapter. I bought extra copies of it, so that I would have access to it in many places without needing to depend on carrying it around with me. Then I carried it around anyway. David is quoted in my chapter several times, but not as many as I wanted.

This book is beyond being a must-read on the topic. After the book had been out for a few years, reviewers started to denigrate it based on its age, saying things like, “Surprisingly relevant, given how dated it is.” I always want to blow raspberries when I hear things like that. This book has at no point since publication been anything less than the most important work available on the topic of the dynamics of transparency and privacy in our evolving society. READ THIS! There are others that go into specific aspects in more depth, but I know of no other single work that does such a brilliant job of tersely describing the issues, trends, risks and benefits of various scenarios. (Not to mention that David studs the book with little gems of quotations from other writers, giving you clues about who else to read to extend your reading in this area.) David himself does take this to the next level with his new fiction masterpiece, Existence, which places many of these core concepts in story form for easy digestion. Read both!

The Transparent Society: Secrecy vs. Privacy, Part 1 http://www.youtube.com/watch?v=r0AX79lT4_c

The Transparent Society: Secrecy vs. Privacy, Part 2 http://www.youtube.com/watch?v=8oz2CZgrm8k

Playlist: http://www.youtube.com/watch?v=8oz2CZgrm8k&playnext=1&list=PL454460A507A72911&feature=results_main

Stack O’ Books — Sources on Transparency and Privacy. Part Seven

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The trouble seems to be that it is no man’s business to understand the general patterns and reactions of science as the economist understands the business world. Given some knowledge of economics, a national business policy can be formulated, decrees can be promulgated, recessions have some chance of being controlled, the electorate can be educated. I do not know, indeed, whether one might in fact understand the crises of modern science so well as to have the power to do anything about them. I must, however, suggest that the petty illnesses of science — its superabundance of literature, its manpower shortages, its increasing specialization, its tendency to deteriorate in quality — all these things are but symptoms of a general disease. That disease is partly understood by the historian, and might be understood better if it were any man’s professional province to do so. Even if we could not control the crisis that is almost upon us, there would at least be some satisfaction in understanding what is hitting us. (p. 193)

Science Since Babylon (1961), by Derek John DeSolla Price

Comment: Another important work from the classics I read in graduate school. I find it ironic that the challenges for the practice of science explicitly articulated here — “its superabundance of literature, its manpower shortages, its increasing specialization, its tendency to deteriorate in quality” — are even more prominent now, fifty years later, than they were in 1961 when Price described them as a disease.

Image source: http://en.wikipedia.org/wiki/File:DerekdeSollaPrice.jpg

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You see, I have the advantage of having found out how hard it is to really get to know something, how careful you have to be about checking the experiments, how easy it is to make mistakes and fool yourself. I know what it means to know something, and therefore I see how they get their information and I can’t believe that they know it, they haven’t done the work necessary, haven’t done the checks necessary, haven’t done the care necessary. (p. 22)

The Pleasure of Finding Things Out, by Richard Feynman.

Comment: It is always entertaining to read Feynman, and his insights into the practice of science, its dynamics, strengths and weaknesses, are valuable to consider even when you disagree with him. If you disagree with him, can you refute him, and if so, based on what evidence? The issues he raises here, about making mistakes and fooling yourself, are especially critical for each innovator to consider in this time of rapid change when innovations arise, crest, and vanish before we have time to evaluate their unknown risks and hidden costs.

The Pleasure of Finding Things Out, Richard Feynman Interview (1981) http://www.youtube.com/watch?v=FXiOg5-l3fk

Stack O’ Books — Sources on Transparency and Privacy. Part Six

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There is some evidence that the diffusion of a scientific innovation is a fashion-like process in which influence is transmitted through steadily expanding networks of scientists. Thus it is plausible to view science as an enormous cluster of innovations, of which the most successful are diffused by means of a contagion process that produces a logistic curve in all facets of scientific activity. Behind the seemingly impersonal structure of scientific knowledge, there is a vast interpersonal network that screens new ideas in terms of a central theme or paradigm, permitting some a wide audience and consigning many to oblivion. (p. 76)

Invisible Colleges (1972), by Diana Crane.

Comment: Some debate the scholarship and design of the research on which this work is based, but say what you will, this was at that time one of the works that most influenced thought on how social relationships shape knowledge and our understanding of scientific discovery. Much of our current work on the influence of social networks on scholarship and policy development is based at root on the thoughts expressed in this book by Diana Crane. The influence of this book extends far past academia to the design and development of such now-everyday tools as Facebook and Twitter, and even to popular culture, with this anecdotal example:
IF “Invisible = Unseen”
AND “College = University”
THEN “Invisible College” = “Unseen University”.

Rosicrucian “Invisible College” Source: http://upload.wikimedia.org/wikipedia/commons/a/a5/Templeofrosycross.png

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It makes sense that having two cerebral hemispheres that process information in uniquely different ways would increase our brain’s capacity to experience the world around us and increase our chances for survival as a species. Because our two hemispheres are so adept at weaving together a single seamless perception of the world, it is virtually impossible for us to consciously distinguish between what is going on in our left hemisphere versus our right hemisphere. (p. 28)

My Stroke of Insight (2006), by Dr. Jill Bolte Taylor.

Comment: There were two specific ways in which this book caught my interest. One was this concept shown in the quote above that apparent opposites need not necessarily actually function in opposition to each other, but may instead be complementary and necessary aspects of forming a functional whole. The other aspect is the idea that we cannot easily perceive that which is part of our body or part of our existence when it functions normally, but only when it does not. Like Dr. Jill, I also suffered a kind of brain damage, most notably when I suffered severe chronic long term carbon monoxide poisoning a dozen years ago. We are often told that we cannot feel things inside our brain, but as part of the damage and healing process, I had powerful visceral sensations associated with trying to think about memories or skills located in the damaged area, as well as the sensations of the neurons sending out new or extended axons, probing around the damage, trying to find a new path to the old information. Similarly, we don’t tend to notice our feet unless they hurt, our lungs unless we are struggling to breathe, etcetera. Both of these are important lessons not just for how we as individuals listen and learn, but also how professions discover creativity, nations change economic and policy strategies, and possibly even for us as a species.

How it feels to have a stroke. http://www.youtube.com/watch?v=UyyjU8fzEYU