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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A False “Rosetta Stone”

Posted on December 3rd, 2014 by

Earlier this fall I had the opportunity to speak to the brotherhood of Baltimore Hebrew Congregation about the life of Mendes Cohen and the origins of Jewish Baltimore.  In preparation for the lecture, I thought it was incumbent on me to try to answer the question: “was there a connection between the Cohens and the community that built the Lloyd Street Synagogue (the original site of BHC)?”

I had the benefit of the research of Dr. Eric Goldstein, the Emory University scholar, who has been studying early Baltimore history on our behalf.  Dr. Goldstein had pointed out that the early Jewish settlement in Baltimore was highly transient.  A majority of Jews arriving between 1780 and 1820 stayed for just a few years, making it a tough environment for the establishment of permanent Jewish institutions.  There was a Jewish cemetery by 1797, but no regular minyan or congregation.  Baltimore was a frontier of Jewish world.

The Cohens were an exception to the pattern of transience.  Arriving in Baltimore from Richmond in 1808, they prospered in the lottery and banking business.  Like their close friends, the Ettings, the Cohens followed Sephardic traditions.  By contrast, new Baltimoreans after 1820 were almost entirely Germans practicing Ashkenazic rites.

Different sources give different accounts of when the first weekly minyans were held in Baltimore, some cited 1827, just a year after the passage of the Maryland Jew Bill.  Others claim that the practice of minyans in people’s homes began following the High Holidays in 1829.  Everyone seems to agree that this gathering called itself Nidche Yisrael (the “scattered of Israel”) and sought a formal charter as Maryland’s first Jewish congregation in 1830.

This is where my online research began.  Several sources, including the 1976 official history of the BHC, put the first minyan in the home of Zalma Rehine.  The Jewish Virtual Library stated that Rehine was a successful Richmond merchant (and a founding member of the Richmond Light Infantry) who moved to Baltimore in 1829.  The short article also pointed out that Rehine was the uncle of Isaac Leeser.

Now I may never have heard of Rehine, but Leeser was another story.  One of the most prominent Jewish spiritual leaders of pre-rabbinic America.  Leeser, technically the “cantor” of Mikveh Israel in Philadelphia, is known today for having introduced the practice of weekly sermons and for having made the first English translation of the Torah in the United States.  Leeser was present at the opening of the Lloyd Street Synagogue in 1845.

It turns out that Leeser and his uncle carried on an active correspondence in the 1830’s.  That correspondence is now archived as part of the 2100 letters in the Gershwind-Bennett Isaac Leeser Digital Library of the University of Pennsylvania:

Image courtesy of the Leeser Library.

Image courtesy of the Leeser Library.

http://leeser.library.upenn.edu/ilproject.php.  And that’s where I thought I found my Rosetta Stone!

Here was one letter that connected the “founder” of  BHC with the Cohens.  Moreover, it suggested that the relationship was so close that Dr. Joshua Cohen (Mendes’ brother) was among the trusted few who actually previewed Leeser’s sermons.  The story about chasing after the home robbers was just icing on the cake.

As so often happens, further research burst my bubble.  In trying to gather more detail on the relationships I ran across an article in the November 1976 issue of the American Jewish Archives.  The article by Ira Rosenswaike was entitled “The Founding of Baltimore’s First Jewish Congregation:  Fact or Fiction?”.  Rosenswaike explores in some detail the Rehine story, tracing its origins to an early 20th century lecture by Henrietta Szold.  Szold reportedly told her audience that a respected community elder had once recollected that an early minyan was held at the home of Zalma Rehine on Holliday Street.  Szold noted “this may possibly have been the beginning of Nidche Israel”.  Later accounts simply dropped the “may possibly” caution and said with certainty that the minyans began at Rehine’s home.  After noting the low likelihood that a Sephardi just arrived from Richmond would start an Ashkenazi Jewish minyan in Baltimore, Rosenswaike moves to some fairly solid census evidence that points to Rehine still residing in Richmond in 1830…at least a year after the regular minyan started meeting in Baltimore.

Although this nearly 40 year old article disproved my “Rosetta Stone”, I still remain hopeful that we’ll find a link between the Cohens and the Lloyd Street Synagogue.  I invite you to join me in this quest – the search is at least half the fun.

Marvin PinkertA blog post by Executive Director Marvin Pinkert. To read more posts from Marvin click HERE. 

Posted in jewish museum of maryland




JMM Insights: November 2014

Posted on November 21st, 2014 by

This week’s edition of JMM Insights highlights the work of two of our volunteers, Martin Buckman and Vera Kestenberg, who have been diligently compiling a database of Jewish Times birth records. This important genealogical resource can be accessed from the JMM website along with other important databases such as burial listings and circumcision and midwife records.

Marty and Vera have been working on an ongoing project that lists all births that were announced in The Baltimore Jewish Times starting with the March 1928 edition. From these newborn notices, they have created a database that now contains pertinent information about more than 10,000 births. It should be noted that while this database is not a complete record of all the births that occurred within the greater Baltimore Jewish community (because not all new arrivals were routinely reported to The BJT) it is probably a good representation.

We are thrilled to report that the database has surpassed 10,000 listed births, a major accomplishment. In recognition of this important milestone, I asked Marty and Vera to share some insights that they have learned from their work on this project and here are some of their thoughts regarding the popularity of names:

Marty & Vera

Marty & Vera

Marty Buckman:

I thought it would be interesting to learn which given names were the most popular in the Baltimore Jewish community during three distinct eras: the initial period of 1928 through 1941; the World War II years of 1942 through 1945; and the post-war years from 1946 through 1954.

The ten most popular female names from the 14-year era beginning in 1928 were (in descending order) Barbara, Elaine, Phyllis, Judith, Beverly, Lois, Harriett, Marcia, Ruth and Linda. The list of favorite male names was headed by Howard, David, Stanley, Robert, Louis, Barry, Edward, Richard, Joseph, Marvin, and Stuart or Stewart. Most of the reported hospital births took place at Sinai Hospital; to a much lesser degree, Women’s Hospital, University Hospital, Church Home and West Baltimore General Hospital followed.

During the four war years 1942 through 1945, Barbara was still the leading female name but the rest of the list changed somewhat to follow with Harriet, Susan, Linda, Ellen, Judith, and Marcia or Marsha. For the males, David moved to the top of a list that was sprinkled with some newcomers- Alan, Stephen or Steven, Michael, Richard, Barry, Howard, Robert, Harvey and Ronald. The top three hospitals remained the same: Sinai, Women’s, and University followed by Franklin Square and West Baltimore General.

After World War II, from 1946 through 1954, Susan rose to the top to become the favorite female name, followed by Barbara, Judith, Linda, Deborah or Debra, Ellen, Sharon, Nancy and Carol or Carole. Male names were dominated by Stephen or Steven, followed by Mark or Marc, Alan or Allan or Allen, Michael, David, Robert, Richard, Jeffrey, and Howard. Sinai and Women’s remained the favorite hospitals, followed by West Baltimore General which became Lutheran Hospital , University and Johns Hopkins.

When we reach our 15,000th name, we will take another look at our database to see if and how preferences have changed.

Additional Comment by Vera Kestenberg:

One interesting thing to note is that many announcements do not list the mother’s name, just Mr. and Mrs. (husband’s first name followed by last name). It gives the appearance that the mothers have nothing to do with the birth!

 

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