The American Society of Human Genetics Comes to Town!

Posted on October 16th, 2015 by

Baltimore’s downtown was filled with more doctors than usual last week, as the American Society of Human Genetics (ASHG) held its annual meeting at the Convention Center. Though I’m not a real doctor, I dropped in to do some on-the-ground research for the “laboratory” section of the JMM’s upcoming exhibit, Beyond Chicken Soup: Jews and Medicine in America. Most of the attendees were laboratory scientists who study the genome. Some look for markers of future illness, while others use genes to piece together the history of human populations, both topics that we’ll touch on in the exhibit.

Alicia poses with the conference catalog.

Alicia poses with the conference catalog.

Translating basic scientific research into medical applications used to be a slow process, but in genetics it’s become almost instantaneous: studies reveal a gene linked to a disease, and screening providers add the new marker to their massive and growing catalogues of potential maladies. On the surface this seems like a great development, but medicine is still figuring out how to understand and act on genetic risk.

Part of the ASHG meeting was an enormous expo of genetic technology companies, from big names like Affymetrix to garage start-ups. Roaming the booths to collect contemporary genetics ephemera, I was intrigued by the variety of services on offer. There’s big money in biotech, but who’s making sure that these innovations actually help patients?

Conference swag: Everyone loves an assertive pin.

Conference swag: Everyone loves an assertive pin.

The ASHG also includes genetic counselors and bioethicists whose job it is to integrate new technologies into medical practice with respect to patients’ rights and social values. I spoke with one clinician, Dr. Sophia Hufnagel, who specializes in pediatric genetics; she works with children and their families to make sure that they understand and consent to testing, and helps them interpret the results.  Her research explores how young people feel about the ethical questions that their elders sometimes try to protect them from.

The teenagers who Dr. Hufnagel surveyed didn’t want to be shielded from the results of genetic testing (at least in a hypothetical scenario). Many said that knowledge of an inherited risk “would help them plan for the future,” or even lead to scientific research that might produce better treatment. Hufnagel observed that many adolescents “have adequate decision-making capacities” and could be granted more agency in their own medical treatment. From a clinical perspective, though, it’s impossible to make hard-and-fast rules. “I’m a huge advocate for partnership” with patients and families, Hufnagel explained. “Everything has to be case-by-case.”

Conference Swag: Cute mascots, or, the mole who collects and stabilizes your biological samples.

Conference Swag: Cute mascots, or, the mole who collects and stabilizes your biological samples.

This notion of “partnership” kept popping up in my perambulations through the convention center. Interestingly, it got lots of play in the technology expo, where company reps described their approach as “partnering” with physicians, patients, and genetic counselors. This seemed to reflect the professional norms of bioethics that Hufnagel described. At the same time, there’s a different logic at work for corporations that sell genetic testing services. Their profit and competitive advantage comes, in part, from creating the desire to know everything one possibly can rather than protecting “the right not to know” that Hufnagel carefully defends for her patients. This desire plays on popular perceptions of scientific authority and genetic determinism that don’t capture the complexity and uncertainty of current medical genetics.

This new industry is still forming – the FDA intervened in 2013 to halt direct-to-consumer (DTC) sales of medical genetic tests by the company 23andMe, mandating that physicians request such testing. Just this year, the agency changed course and approved 23andMe’s DTC test for Bloom Syndrome, opening the gates for companies to market over-the-counter screening products for a wide range of diseases. FDA administrator Alberto Gutierrez said that Americans should have “direct access to their personal genetic information… [which] supports innovation and will ultimately benefit consumers.” I met a lot of people who will benefit from this ruling, prowling among pipette displays and novelty pens at the ASHG expo. But the implications for consumers seem far more ambiguous.

Conference Swag: Genetic testing companies like this one provide preimplantation genetic screening of human embryos, plus humorous stress balls to help you cope with the dystopian future.

Conference Swag: Genetic testing companies like this one provide preimplantation genetic screening of human embryos, plus humorous stress balls to help you cope with the dystopian future.

As part of our preparations for Beyond Chicken Soup, I and curator Karen Falk have been sketching out interactive ethical scenarios for museum visitors rather like the one that Dr. Hufnagel posed to her study subjects: would you want to know the results of a genetic test if it could reveal an untreatable condition in your future?  The goal isn’t to get a “right” answer, but rather, as Hufnagel underscored, to reflect on your personal priorities: what level of knowledge would you feel comfortable with? Hufnagel’s work brings out an important dimension to these questions: when would you want to know? “The big worry [with teens],” she explains, “is that they can’t unknow it – they have that knowledge for the rest of their life.”

Conference Swag: Chocolate with a candy shell promotes "innovation in clinical and process data management."

Conference Swag: Chocolate with a candy shell promotes “innovation in clinical and process data management.”

Questions of how well people understand risk, how much they want to know, and what technology can really tell us will only get more complicated as the biotech industry flexes its muscle and scientists burrow deeper into the genome. Look out for the genetics section of Beyond Chicken Soup, where we explore the history of genetic screening in the Jewish community and the directions it’s taking today.

Alicia PuglionesiA blog post by Assistant Curator Dr. Alicia Puglionesi. To read more posts about our Beyond Chicken Soup exhibit click HERE.

 

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The Usefulness of Ephemera

Posted on September 30th, 2015 by

A refrain I’ve heard several times while prepping “Paul Simon: Words and Music” goes along the lines of “Oh, too bad I got rid of all my record albums!” Fortunately, getting rid of records is not something the Church family does easily, and so a supply of Paul Simon and Simon & Garfunkel albums was ready to hand. My parents saved their records, even after there was no longer a record player in the house, because (among other reasons) there was space in the basement to store them. I myself saved some of their records because (among other reasons) I am sentimentally attached to things that my parents wrote their names on when they were young.

“M.C.M. ‘72” noted inside “Bridge Over Troubled Water,” courtesy my mother. The same thing can be found on the other albums pictured here. Don’t steal teenaged Margaret’s records!

“M.C.M. ‘72” noted inside “Bridge Over Troubled Water,” courtesy my mother. The same thing can be found on the other albums pictured here. Don’t steal teenaged Margaret’s records!

I am a believer in the significance of ‘ordinary’ artifacts – like my parents’ records – though I’m as susceptible as anyone else to the lure of the Famous Person’s Belongings. What I particularly enjoy, in all cases, is the story of how and why a particular artifact was saved. My favorite tidbit from “Paul Simon: Words and Music” is the fact that Simon didn’t know what happened to his red jacket from the Tom & Jerry days, until a cousin said something to the effect of “Hey, do you want this jacket back?” (How many rock stars wish they had such thoughtful relatives? And how many rock stars’ parents wish now that they hadn’t cleared out all those beat-up amps and stage costumes from the pre-fame era?)
There are several instances in this exhibit where the importance of artifacts – both to the artist and to the audience – is part of the narrative, explicitly and implicitly. I’d argue that, as exhibit visitors, some part of us is thinking about the how and why of artifact survival, even if most of our brain is taken up with “Wow, that’s the real thing.”
My challenge to you, potential “Words and Music” visitors, is to take a close look at the variety of objects, papers, and other visuals included in what is, technically, an exhibit about an audio format. Then, plan a hypothetical exhibit about your own favorite music. (Favorite from today, from your youth, from your own songwriting genius, whatever you prefer – this is an unstructured homework assignment, don’t worry.) The fun of exhibit creation is finding those particular items that will illustrate a concept and help the viewer make connections. What have you hung on to, accidentally or deliberately, that might help you explain to your hypothetical viewers why that particular song, artist, or genre of music is important to you? Is there a correlation between the important music, and the items you discover that you’ve saved? What would you include in the exhibit if you could go back and find a now-missing poster, t-shirt, or hand-written lyric?
P.S. This is not intended to make you feel badly for disposing of anything over the years. But if you have, spare a thought for the exhibit designers who have to deal with all the people who’ve told them, “Oh, too bad I got rid of all that stuff!”

JoannaA blog post by Collections Manager Joanna Church. To read more posts by Joanna click HERE.

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Louisville: Bourbon Barrels, Baseball Bats and Big Ideas

Posted on September 24th, 2015 by

Sandwiched between Rosh Hashanah and Yom Kippur, Ilene Dackman-Alon and I attended the 75th annual meeting of the American Association for State and Local History, held this year in Louisville, KY.  It was a great opportunity to tour museum sites, confer with colleagues, discuss industry trends and return with ideas to improve JMM.  Here are a few of the highlights:

1. Serving the Visually Impaired – Ilene attended a workshop at the American Printing House for the Blind. Founded in 1858, APH is the oldest organization of its kind in the United States. From 1858 until the Civil War began, APH organized its operation and raised funds to create embossed books. After the war, APH produced its first tactile books. By the early 1870s, APH was operating on a national scale. APH is the official supplier of educational materials to all students in the U.S. who meet the definition of blindness and are working at less than college level.  We saw the actual printing of pages with Braille letters as well as the binding of the books.

 

An APH educator

An APH educator

It was fascinating to hear from museum educators (who happened to be visually impaired as well) about how they experience museums and the importance of making museums accessible to all types of learners using a variety of interactives and engaging materials for all of the  senses.  I loved seeing all of the different tactile materials that are produced at APH in so many subjects (music, math, science, English arts, social studies).  They even showed us the Braille version of the program from President Obama’s Second Inauguration.

A display on music at APH

A display on music at APH

I was pleased to see that that many of the steps that the JMM has taken to serve the visually impaired under the leadership of Robyn Hughes are in line with best practices at APH. As we move forward in creating new exhibits at the JMM, I hope we can implement some of the ideas such as wheel-chair level chair rails, Braille texts and panels to create a richer museum experience.

 

Trilobite touch wall at Falls of the Ohio State Park.

Trilobite touch wall at Falls of the Ohio State Park.

Marvin took a tour of neighboring historic sites and also had a chance to see some interesting work being installed at the Falls of the Ohio State Park (just across the river from Louisville) where a firm had integrated tactile exploration into every part of its core exhibit.

2. We also enjoyed hearing the keynote speaker, Sam Wineburg, author  of  Historical Thinking and Other Unnatural Acts.  Wineburg is an educator at Stanford’s Graduate School of Education.  He recently developed the Reading Like a Historian Curriculum which has been downloaded  over 2  million times.  The curriculum engages students in historical inquiry, one of the basic pedagogic skills that is a thrust of the Maryland Career and College Ready Standards and Common Core curriculum.  Each lesson revolves around a central historical question and features sets of primary documents designed for groups of students with diverse reading skills and abilities.

Wineburg  used the term “digital natives” to describe the generation that has grown up in the digital age.  The Internet provide us with so many different websites .  One of the questions that he raised,  Who is an Informed Citizen in the Digital Age?  How much of the information on the web should be believed?  Wineburg spoke about  “The Digital Tookbox”  and questions that one must ask to realize if the information and website really come from a reliable source.  He spoke about a case study that took place in Los Angeles, where teachers gave the students three websites and had them write about the reasons for the Holocaust.  All three website had not been vetted, and many students took the information on the website as absolute facts.  They went on to write essays with claims that the Holocaust never took place.

3. The history relevance campaign – a group within AASLH (among the leaders, Baltimore’s own John Durel) is trying to create energy on a national campaign to promote the value of history.  The effort was a response to the marginalization of history as a subject matter, both in schools and in the public conversation about cultural institutions.  The organizers  are stressing a common vocabulary that organizations like ours can use in making the case for greater civic and foundation support:  http://www.historyrelevance.com/#!value-statement/ca2m.  In the coming months I will be urging Historic Jonestown Inc., the Greater Baltimore History Alliance and the JMM Board to add our voices to this national movement.

4. A different way of looking at historic sites.  The archeologist giving the tour at the Farnsley-Moremen House began his talk by saying “no one famous or important ever lived here, it was not the site of a battle or any other monumental event.”  He went on to demonstrate, however, that it was a great site to talk about historical thinking and to engage the public in the process of uncovering history.  It caused me to think deeply about the balance we need to achieve between fixing our gaze on the important historic events that took place in our synagogues and on our block – and the illustrations we can offer through these spaces about “how we know” the lives of average Jewish Marylanders.

At the Falls, Jay was just a stiff, at Farnsley-Moremen House he was our very lively guide.

At the Falls, Jay was just a stiff, at Farnsley-Moremen House he was our very lively guide.

5. “Unfolding Events” – in many ways this was the most thought-provoking session I attended.  It was an open forum discussion about how museums could/should respond to “unexpected events” that have strong impacts on the cultural community – examples included Ferguson and Baltimore, the legislative struggle over gay rights that especially impacted Indiana, and the debate over Confederate flags, statues and emblems that is raging within and without Civil War sites.  One of the most interesting side-bars was the question of the obligation of museums to collect materials on political and social controversies that impact their respective communities.  This is a topic we raised at this week’s JMM Collections Committee.

6. One more honor for Mendes Cohen.  Ilene and I have to admit that one of the highlights was taking home the Leadership in History Award for the A-Mazing Mendes Cohen project.  What a great tribute to the whole team that put together this incredible project.  On the morning of the awards ceremony, Ilene and I staffed a booth explaining the background of the exhibit and living history character.  The most bittersweet moment was that nearly everyone who came by the booth said “when can I come and see it” and we had to explain the unhappy fact that the project had expired.  It certainly was an inspiration to bring back some of this experience within our new core exhibit.

Our poster presentation

Our poster presentation

postersession

Poster Accessories

7. Finally – full confession – we also had fun.  Marvin attended a workshop on “gamification” of museum content.  For someone whose two top passions are board games and museums this was as good as it gets.  On Thursday night we took a stroll down “Whiskey Row” – now home to several museums including the Frazier Museum (with a great homemade exhibit and theater program on Lewis and Clark) and the Louisville Slugger Factory Tour.  Here you see me holding Mickey Mantle’s baseball bat (but that’s only because Hank Greenberg’s wasn’t available).

A true Louisville Slugger

A true Louisville Slugger

But by far my most unusual Louisville experience was attending a small reception at the Evan Williams Bourbon Experience.  This is the home of a business that proclaims itself Kentucky’s first commercial distiller.  It is indeed still a family owned business – except that family is not the Williams’ it’s the Shapira’s that have owned the parent company, Heaven Hill, for seven generations (for those of you who attended the Schnapps with Pops program in June, this comes as no surprise).  The tour of the faux factory was entertaining and it ends with a bourbon tasting.  I’m afraid the 23 year old bourbon was wasted on my uneducated palette.

Video screens informed you how to properly "taste" the bourbon.

Video screens informed you how to properly “taste” the bourbon.

Next year this conference moves to Detroit.  I’ll let you know if they let us test drive a Corvette.

A blog post from Executive Director Marvin Pinkert and Education Director Ilene Dackman-Alon. To read more posts by Marvin click HERETo read more posts by Ilene click HERE.

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