On October 20th 2017, I had the opportunity along with others from Pratt Institute to visit the Kim Barrett Memorial Library at the Hospital for Special Surgery(HSS) in New York. The tour was given for information profession students to observe the roles, responsibility and functions of Medical Information librarians and centers. During the visit there was a gracious warm introduction by Rie Goto, Medical Librarian, at Kim Barrett Memorial Library in Hospital for Special Surgery. The Tour was also  preceded by a short Pre-tour talk by Terrie R. Wheeler, AMLS, Director, Samuel J. Wood Library and C.V. Starr Biomedical Information Center. In her brief tour introduction, Terrie talked about the role of information Librarians specifically in the medical field and the important role they play and the value they bring to the medical field. She gave insight to unforeseen things like grant writing and data retrieval speciality positions that information librarians have played over the years and are still growing into. The Medical Information tour then proceeded with us visiting the 3 other prominent information centres neighbouring the Kim Barrett Memorial Library for further observation. The other Information Libraries visited were Myra Mahon Patient Resource Centre, Weil Cornell Medical Samuel J Wood Library and The Rita and Frits Markus Library, Rockefeller University.  

The tour of the Myra Mahon Library, was facilitated by the Information Librarian who gave us a recap of the responsibilities of librarians at the center. The responsibilities as we observed during our visit ranged from answering the phone for inquiries from patients and their families on Medical information to guiding patients that come into the Information center on how to retrieve information from archives that are now digitally stored. While we were there we observed in realtime patients retrieving information for themselves.  After our Myra Mahon visit, we also visited the Weil Cornell and Rockefeller Libraries were we also observed the patients retrieving information before returning to the Kim Barrett Library at HSS.

On our return back to the Kim Barrett Medical Library, the Librarian continued the session with showing us remodeled spaces that had once been areas for stored hard copy papers, books and Journals that had now been digitized. We were then led into the Kim Barrett Library where we were shown the Labs where the Medical students and doctors retrieve information on the database and from book shelves. Surprisingly, there were not a vast amount of hard copy books in the book cases as Rie Goto, Medical Librarian, attested to and confirmed most information had been digitized. Rie explained the digitization of the medical documents had helped increase accessibility and reduced time to deliver the information of the Library materials.

Rie, also presented archived medical documents going back all the way to the early years of the hospital, which was interesting to see the way information was archived in the past.

She also presented physical artifacts, medical tools that had been used in the earlier years that had now been archived and only used for historical reference.

We were able to observe students use the Medical Library to retrieve data from the database while we were there. Rie had also explained the role Medical Librarians currently play in the Hospital.  She mentioned how the Librarians assisted in conducting systematic reviews of data and information and were consulted by doctors at times for literature for their patience or the children. One of the challenges Rie talked about that Librarians had faced in the past and were still facing to a degree was the challenge in some cases of no way to retrieve institutional history that was not properly archived in the past, to identify documented people in old pictures on files.  One of the interesting stories Rie told behind the importance of proper documentation of pictures for the information medical centers, comes from the actual story of how the Medical Library got its name. She explained that on August 3, 1947  there was a fire and the library was almost destroyed. The Librarian on staff was a female named Ms.Barrett. After the fire the story has it that she, Ms. Barrett, single-handedly sifted through the burnt remains of documents like books and Journals to save what was left. Years later in 1977 after the Library had been rebuilt, the Alumni association named and dedicated the medical library in her memory.

However at first the process of naming the library was a little challenging task as the documented name on the file for the Librarian was not found in the records of the Hospital. After further research her proper name was discovered and the rest is history, it also turns out she was the first and only section of the library to be named after a woman. One might say her contribution led her to be a recognized pioneer of females in the information professions. Which sheds light on the ongoing topic even today of the under representation of the contribution of women in the information profession as a whole, in a public way.

In Hospitals and medical institutions, Medical information professionals also play a major role in retrieving information from databases for medical teams and doctors. They can play a key role in helping out in the design and structuring of medical databases. According to Rei there are still no general widely accepted standards to documenting data and she suggested Librarians can play an instrumental role in creating acceptable solutions since they deal with both the data and those seeking information from the databases on a regular bases.

In summary of the observation session that occurred at the medical information centers , it was evident to see as witnessed in person that the role of medical informational professionals have evolved over the years from the typical archivist to adding values in growing ways to medical information centers like training of patients to research and grant writing. The art of grant writing is a major task and huge source of  fund raising for research in medical centers and Medical information librarians are center to this as they are  knowledgable to information that can support proposal requests. With this being said, Medical Librarians and information professions have come a long way but definitely still have more to actualize and see be done in their field.

The Mount Sinai Hospital of New York City has a respected and established Genetics and Genomic Sciences department. The cancer genetics area of the department counsels patients before and after they choose to undergo genetic testing. The industry of genetic testing has expanded rapidly in the past ten years as science continues to identify specific gene mutations and their impact on individuals’ health risks. It has become more common for healthy adults to undergo genetic testing as a measure to predict cancer development based on the statistics and data related to known genetic factors. Genetic mutations can have harmful, positive, or neutral implications for a person’s risk profile. Ten years ago there were seven “significant” gene mutations that were understood and could be tested for. Today there are hundreds. Regardless of your genetic mix, there is no way to change your genes and the predictions for illness are only based on percentages in the data. There is no formula whereby an individual can know how their own health story will actually play out. Inherited mutations are believed to play a role in approximately 10% of all cancers. (National Cancer Institute, 2017)

Because you cannot change your genetic profile, the question is whether the knowledge of being “positive” for a negative gene mutation is beneficial to one’s physical and psychological health. In some cases, having the information can allow for preventive surgeries and screenings that may reduce or eliminate the risk for certain cancers. The knowledge also has the potential to reinforce healthy lifestyle choices for those wishing to mitigate genetic risk factors through environmental or habit changes. The genetic counselor’s job is to spend time with the patient before they have testing done to assist them in determining whether the knowledge of their genetic profile will lead to a positive, healthier life (in the case of a patient who is ready and willing to take action as a result of the diagnosis) or whether the information could simply increase stress around a condition if the patient is unable or unlikely to change their situation. The counselor must also be aware of his/her own biases throughout the process to avoid leading the patient’s choice. After genetic testing is complete the counselor meets again with the patient to discuss the results and work through next steps, if medical intervention is recommended.

As with the collection of other large data sets, the collection and analysis of genetic data brings with it unintended consequences. Issues of privacy, access, and discrimination exist in this domain. “Given enough data, intelligence and power, corporations and governments can connect dots in ways that only previously existed in science fiction.” (Howard, 2012) Privacy risks involved with cancer genetic testing include discrimination by insurance companies based on higher risk of illness and pre-mature death. In 2008 the Genetic Information Nondiscrimination Act (GINA) was passed to protect those who have had testing from discrimination by health insurance agencies and employers. However, the law does not cover disability, life, or long-term care insurance and those entities are increasingly likely to ask potential customers whether they or anyone in their family has had genetic testing that revealed a significant mutation. Our longevity metric could land in the mix of profit-loss equations for these big businesses.

Those who are not covered with good insurance and those in poverty are far less likely to be able to get genetic testing at all, which means this trend could perpetuate discrepancies in life expectancy of wealthy vs. poor patients. Patients who can afford the testing will have more information and may be better able to make informed choices to extend their personal health and health of their family members.

The chart below maps the procedure for counseling, testing, results, and follow-up care. It is perfectly fine to decide “Not to Know” about one’s potential genetic risk profile. What the counselor seeks to avoid, is to reveal a significant mutation without doing anything with that information to mitigate the risk. Knowing can be a burden and should be used as the power to changing outcomes.

In order to set up the 3-hour observation, I contacted Karen Brown, Director of the Mount Sinai Cancer Genetic Counseling Program. She directed me first to speak with Volunteer Services at the hospital to meet the basic requirements for observing in any capacity at Mount Sinai. I was sent an “Observer Form” which needed to be signed by the counselor who I would shadow. I also had to provide the following:

1. Proof of HIPAA training. The Health Insurance Portability and Accountability Act is a law that applies to all healthcare industry professionals and their subcontractors and affiliates to create privacy protections around patient healthcare information (to which I would be exposed during my observation)
2. Proof of medical clearance and toxicology screening
3. Verification of credentials and qualifications (degree, letters of reference, CV)
4. Flu shot
5. Security photo ID (provided through the hospital)

My observation day was Friday, October 13, 2017.

First I sat with the front desk “intake” crew at the Cancer Genetics department. Calls come in at a steady pace from patients asking for genetic counseling. Most have been referred by doctors because they are exhibiting pre-cancerous symptoms at a younger-than-usual age. Others have been referred because a family member has tested positive for a known “significant” mutation and they want a diagnosis for themselves. Others call without a referral and are turned away to get a referral from their primary care doctor. If they have no clear medical reason for testing, they have the option to have testing due to “patient concern” and pay for the process out of pocket (they still must have a referral from a doctor to take this route). The cost is typically anywhere from $500 to $3000. Large insurance companies generally cover some or all of the costs for patients with family history of a known genetic mutation or if a parent or sibling has died of cancer under the age of 50 (a marker that genetics may have been at play).

Demographic information and medical history are collected over the phone after which the patient is directed to a website where they enter extensive family history information into a family tree template (specifically any history of cancer, cancer deaths, or pre-mature deaths due to illness that the patient is aware of).

Next I sat in with a cancer genetics counselor for a pre-testing appointment. I watched the interview process whereby a 42-year-old patient who has concerning symptoms learned about how the genetic test is done and what she may learn by submitting a DNA sample. The pre-cancer she has may be bad luck or it may be genetically inherited. The counselor goes through every person identified in the patient’s family tree and which relations died of cancer. All of this data will be entered into Mount Sinai’s database.

There is a specific panel of testing that the counselor highlights to this patient according to her symptoms. If the patient is found to have the suspected genetic mutation, the recommendation will be for her to undergo yearly screenings for several cancer types that she would then be known to have a high risk of getting. Surgeries may also be recommended to remove organs that are at high-risk. Many of the known significant mutations raise risk levels for more than one type of cancer. Anxiety understandably may increase with this extensive additional data. The patient is currently concerned about her stomach pre-cancer symptoms, but she may be recommended to have many more cancer screenings in the future if she is tested and the genetic result is positive. As more people have genetic testing more data is gathered to identify additional significant mutations and refine risk percentages for different conditions to which they are linked. The whole process ultimately leads to more data, more information, more screenings, more surgeries and these feed back into the system to create more data linked to each significant mutation. Logically it should reduce premature death rates. It also adds a lot of personal data into the healthcare industry and encourages many more surgeries and doctor visits going forward. The patients will hopefully live healthier and longer. The hospitals will generate more revenue as a result of the many added procedures.

The counselor walks this patient through the process while trying not to convince her of a particular direction. The woman has siblings and children and a positive diagnosis may have consequences for them as well. There are a couple of emotional moments and the patient fidgets nervously. She has a choice to “Not Know” or to possibly “Know.” If there is no genetic mutation identified in her cancer genetic test, she will need to continue looking for care answers with her primary doctor, but her family will not be directly at risk. She decides to move forward with the widest panel of testing because she believes she would rather know her complete cancer genetic profile. Consent forms are signed and the woman is brought down the hall for blood to be drawn. In four weeks she is scheduled to come back in for the results, at which point the next chapter of her care will begin.

Sources:

Alexander Howard as quoted in 2012 in Digital Disconnect by Robert W. McChesney, 2013

National Cancer Institute, https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet, retrieved on October 12, 2017

Mount Sinai Department of Genetic and Genomic Sciences

As knowledge acquirers, we often put faith in libraries and museums to provide us with a full detail of history as it happened. We often expect that these institutions are giving us honest and unbiased accounts of history through objects and artifacts. The architecture of the buildings themselves often assist us in these conclusions as well, with grandiose columns and entryways, built above street level in gleaming white marble, an almost religious agora of information archived on pristine white pedestals. Justifiably, we expect our institutions of knowledge to provide us with knowledge.  But what happens when the history kept in these castles is biased, or incomplete? What if the full history is too troubling to admit to and never gets represented?

This problem has been addressed countless times by those in the information profession. Sharon MacDonald for example writes of difficult heritage in her article,” Is ‘Difficult Heritage’ Still ‘Difficult’?: Why Public Acknowledgment of Past Perpetration May No Longer Be So Unsettling to Collective Identities.” She writes the article in reference specifically to WWII and The Holocaust but the themes of of hidden or shameful history still apply to America and how we look at slavery.

Slavery is that difficult heritage for America. History books, museums, our culture, all talk about slavery as if it happened in a dark distant past of our timeline instead of being interspersed with the invention of the telegraph, and the post office as well as public schools. Like WWII in MacDonald’s article, American slavery is, “[past] ‘recognised as meaningful in the present but that [is] also contested and awkward for public reconciliation with a positive, self-affirming contemporary identity’” (MacDonald 1). As such, it is awkward and uncomfortable to take responsibility for a horrible and tragic part of a country’s own history while still retaining some iota of patriotism and still identifying with a troubling origin. A new museum in Washington D.C. aims to nullify the divide between African American History and White American History by by putting on display objects from our country’s troubling past.

In 2016, the National Museum of African American History and Culture (NMAAHC) opened its doors to the public as the 19th installment of the Smithsonian museums. NMAAHC boasts a collection of over 36,000 artifacts from over as many patrons. The collection is comprised of national treasures like James Baldwin’s passport and Nat Turner’s Bible to items from the closet of the Everyman like old photographs, protest posters, and military medals. What’s best about the collection, apart from its eclectic nature, is that the entirety of said collection is catalogued online on the museum’s website that is easily searchable and requires neither a ticket nor a trip to D.C.

The museum itself structurally functions differently than the traditional history museum. The floor on which a patron starts their excursion through the exhibits is rooted in the soil of the Mall. The exhibitions flow chronologically from past to present, bottom to top, and begin with slavery poignantly buried in the soil of America’s capital, literally and metaphorically laying the foundation for the rest of history to come (Cotter 1). The artifacts range from a child-sized set of iron cuffs to a full sized slave cabin, traumatic and real, the museum also employs rest areas and counselors to speak with, should the presentation of this history become too much. Later in the New York Times article about the museum, Holland Cotter explains, “Its second level, “The Segregation Era,” gives valuable attention to the topic of black entrepreneurship, about which many Americans probably know little. But what stops you in your tracks is the sight of a white satin Ku Klux Klan hood, shimmery and soiled, sitting in a case with photographs of lynchings on display nearby.” The exhibits through formatting and acquisition are carefully curated to not tip the scales of pitied tragedy one way or ignorant optimism the other. The museum director and curators lay out the exhibitions in such a way that they present fully the hardships and successes of black people in America again without falling too far one way or another. Part of what makes this balance possible is the means by which they acquire their artifacts. Prior to the opening of the museum, objects were collected through an antiques roadshow-esque trek around the country. Michele Norris describes the excursion, “They began their work a decade ago believing that many of the artifacts, documents, and treasures that would reveal the story of African Americans were secreted in basements, attics, garages, and storage trunks. Items with high monetary value might be in the hands of collectors, but the curators had a hunch that many with great significance were still undiscovered, because many museums have overlooked black history.” (Norris).

Joan M. Schwartz and Terry Cook address the problem Norris points out of black history being overlooked by museums in their, “Archives, Records, and Power: The Making of Modern Memory” article. “Archives are social constructs. Their origins lie in the information needs and social values of the rulers, governments, businesses, associations, and individuals who establish and maintain them” (3) Like archives, a museum’s content is structured by the establishment that maintains it. Materials are acquired via wealthy donors or notable patrons. The NMAAHC decided to create an updated collective memory of American history by forgoing traditional acquisition and asking regular people to submit objects that they felt held historical significance. Again, Michele Norris says it best,  “At their best, museums help us understand and interpret our complex world by illuminating history and influencing attitudes. That becomes a challenge when we must examine our darkest episodes. Any society scarred by war, genocide, famine, displacement, or slavery must decide what to remember and how to remember. Individual memory is one thing, but collective memory stretches across generations and helps define a nation’s character” (Norris).

The NMAAHC contributes to a wider cultural collective memory of America’s history by calling upon African American people to submit their own bits of history, items that may have otherwise been overlooked as historically significant. The museum puts the control of representation back into the hands of the common people while at the same time giving African American history a platform usually reserved for White America. In doing so, they address America’s most difficult heritage in a way that is informative, has a wide scope, is real, and is not as influenced by what archives or wealthy donors already have. The museum created a new archive of our history that is completely accessible and completely legible even without the trip to Washington. And in enlisting the help of the public to submit artifacts, the museum truly did acquire treasures in the archives of family homes both in the physical form and in the form of a well- rounded knowledge of a difficult past.

References

Bloomberg the popular Data organization in New York,  hosted its yearly Data For Good Exchange conference on  Sunday, Sept 24th, 2017. The theme for the event was “With great data comes great responsibility” focusing on how data can be used to solve public interest problems. The event was gathered by professionals from different walks of life currently using, interested or curious about data. Also, diverse speakers from different sectors of the society shared how data is being applied currently in their various fields. The day opened with passionate keynote speakers sharing current  applications of data to assist in hopeful research for cures for various health issues to recent uses of data in forwarding social causes like gun control regulations. John Kahan, General Manager, Customer Data & Analytics Microsoft, gave an emotional opening presentation on his quest to combat SID (Sudden Infant Death) based on the death of his baby son, Aaron 14 years ago. John has partnered with SIDs Research Fellow fund at Seattle Children’s Hospital to support their cause, he explained the important role data is playing and can play in providing information to help combat SIDs. The other Keynote speaker was Sarah Tofte, Director or Research and Implementation at Everytown, for Gun Safety. Sarah shared on the role data played in helping create policy’s for implementation of good gun laws across the country. The rest of the day was packed with different break out sessions and topics geared towards current initiatives and breakthroughs with data. 

Other topics that were discussed ranged from Building Open data Dashboards for hyper local government, to topics on Ethics and Fairness when it comes to using data in society to influence policy, still  other topics touched upon were in the health sector. While there was so much said by diverse speakers overall recurring themes throughout the conference was the importance and challenge of ground truth data, data that wasn’t biased and trustworthy data. Each speaker reflected on situations that had required the above stated themes in different scenarios the importance of them and their effects in the outcomes of research due to the enabling power or lack thereof of in each circumstance. Like in the case of NYC 311 and regulating the data that was coming in through various media outlet to make informed decisions in creating timely solutions.  Also  during the presentation for Fairness – Aware Predictive Analytics in Child Protective Services: Development, Validation and Implementation, the speakers mentioned challenges where the data received was biased in regards to certain races in some circumstances  and also mentioned how in other cases data had enabled them to increase number of children that had been helped from predictive data that they had employed into their preventive process.

In another session Data driven resilience, one of the speakers Allen Estivalet of WSP an architectural construction company in NYC,  spoke on resourcefulness of data to predict potential erosion areas in construction paths but also the challenges and constraints of not being able to use best data for quality control due to time to validate and vet data with traditional superpowers and stakeholders  in the industry. Which led to his point that data and it’s visualization is a crucial tool in the early stages of projects to help stakeholders see the importance of decisions that need to be made and what to prioritize. Also being cognizant of restrictions due to standards from government and how data can help bring government up to speed with  modern techniques of doing things.

Overall the event topics seemed to correlate with the topics and conversations that take place in the LIS 654 Information and profession course and the Data Analytics and Visualization program at Pratt Institute. The Bloomberg event was created to educate and demonstrate how data is being used for social good across many sectors here in our city, state and the world at large. The  idea of information, its recording and use in society and how it has and continues to impact us  is important to promote the how and why of what is being done. This manifestation and clarity of importance helps make the case during policy making and other situations where there is need for justification of the application and relevance of data. It was impressive to experience the discussions as well as see first hand  at this event from a wide array of industry professionals currently in the information field, how Information topics like archiving, records and methodologies used in research and other topics discussed in class were being used.  The conversations that have occurred in the LIS 654 course class have been focused on information, how it has been generated over the years and archived and most especially its role in society. The understanding of how information has impacted culture has also been touched upon and with the rise of the digital age and also the impact digital media has in restructuring traditional ways of recording and archiving information. Through the years information has had the  power to shape societies at large. Moving forward, it will be imperative to take a look at how data and information is being handled and explore if these techniques are still up to date and can meet the need. And also how best  to capture and deploy all this information being harnessed at an unbelievable rate viable ways. Also other things to think of is the way data is being archived, will these be viable methods in the next 15 to 20 years?

With the increase of Big data being generated from multiple media outlets the challenge remains how all this data can be collected, processed and manipulated in a fair way to create lasting positive impact and change across our societies. To achieve this there will need to be increase in avenues where data can presented and collected to and from all stakeholders in an understandable way so they can understand the importance of data and make proper use of the information generated from it. To this effort, while there are many unanswered questions to data, its generation and possible applications, it is encouraging to see like minded professionals gather to reason and push towards a world with more answers for questions being asked with the aid of data.

In Digital Disconnect, Robert McChesney presents the regard of the press by the founders of the United States of America as the system that is meant to inform the public and expose officials of any crimes against humanity (2003). He gives rise to the notion of the public moving away from gathering such knowledge from traditional sources, like the press system, to the Internet (McChesney 2013). How are we, the actual public sphere, to fare in this time of Critical Juncture? Don’t log off just yet; keep that browser window open and library card. Follow closely on your path to do-it-yourself-consumption of knowledge.

Do Think Before You Consume
Marija Dalbello warns that collecting and publicly exposing information, especially cultural heritage, will result in appropriation and in the transformation of those traditions (Dalbello 2009). Not everything or everyone is willing to be discovered. Or is it?

Do Cite Your Sources
According to CIS experts, it’s impossible to work around copyright and distribution systems (Vaidhyanthan 2006). So don’t double-think it. Just cite it.

Do Share
Retaining rights for your research should result in equal and opposite reactions. Copyright laws protect your work. Sharing the license means that you can change the way commercial industry controls creativity. You can help to shape culture and the essence of copyright (Vaidhyanathan 2006). While we may not know the exact measure of impact, Benkler will argue that sharing and keeping content open is also an opportunity for freedom from borders (Benkler 2006).

Don’t Over/Under Estimate Value
Well you have to, but leave that up to the experts. This group of experts “increasingly discover focus upon context” (Schwartz and Cook 2002). Context is where the true value lies.

Do Question Everything
As Queer Theory proposes, we have to remove evidence of bias from institutions. This is the only way you are going to gain power on how to consume in a just manner. Use evidence as backing (Drabinski 2013).

Don’t Think You Can Apologize Later
No one is listening to you at this point. 

Sources

Benkler, Yochai. “The Wealth of Networks: How Social Production Transforms Markets and Freedom.” Yale University Press. 2006. Accessed September 3, 2017.

Dalbello, Marija. (2009). “Digital Cultural Heritage: Concepts, Projects, and Emerging Constructions of Heritage.” Proceedings of the Libraries in the Digital Age (LIDA) conference, 25-30 May, 2009. Accessed September 18, 2017.

Drabinski, Emily. “Queering the Catalog: Queer Theory and the Politics of Correction.” The Library Quarterly: Information, Community, Policy, Vol. 83, No. 2 (April 2013), pp. 94-111. Accessed September 6, 2017.

McChesney, Robert W. “Digital Disconnect: How Capitalism is Turning the Internet Against Democracy.” 2013. Accessed September 3, 2017.

Schwartz, Joan M. and Cook, Terry. “Archives, Records, and Power: The Making of Modern Memory.” Archival Science 2 (2002), pp 1–19. Accessed September 6, 2017.

Vaidhyanathan, Siva. “Afterword: Critical Information Studies.” Cultural Studies Vol. 20, Nos 2 /3 March/May 2006, pp. 292 /315. Accessed September 3, 2017.

Where did you find the strength to survive Auschwitz? What’s your most vivid memory of the war? What happened to the rest of your family?

Imagine being able to ask a Holocaust survivor these and many other questions. Now imagine your great grandchildren being able to do the same, decades after the last survivor has passed away from old age. A new virtual storytelling installation that allows people to interact with Holocaust survivors attempts to combat the effects of time in the chronicles of personal narratives and memories.

New Dimensions in Testimony, a collaboration between the USC Shoah Foundation and the USC Institute for Creative Technologies, in partnership with Conscience Display, allows future generations the opportunity to interview and interact with Holocaust survivors through virtual platforms. Through thousands of pre-recorded answers, the installation, currently being displayed at the Museum of Jewish Heritage in New York, yields insights into the experiences of Holocaust survivors by means of shared dialogue between learners and two survivors who sit on red chairs behind flat screen monitors. Currently, museum visitors can interact with Anne Frank’s stepsister Eva Schloss and Pinchas Gutter, a survivor of six German Nazi concentration camps. Visitors can ask questions in real-time that trigger relevant, spoken responses (“New Dimensions in Testimony℠ — Museum of Jewish Heritage – A Living Memorial to the Holocaust”). These interactive dialogues create a new kind of record that takes the possibilities of preserving cultural heritage to a new level.

Although the definition of a record is widely debated, throughout this article I use Shannon Faulkhead’s pluralistic definition from Caswell’s “The Archive” is Not An Archives as any account, regardless of form, that preserves memory or knowledge of facts and events. A record can be a document, an individual’s memory… an actual person, a community or the land itself (p. 5).

The New Dimensions in Testimony installation is altering the art of storytelling for the purpose of archiving and preserving cultural heritage through its use of first person narrative, lifelike visuals, and interactive real-time responses. Although records of Holocaust survivors’ experiences have been widely collected, maintained, and archived in the past, this installation removes any distance and ambiguity between the storyteller and his audience. The installation itself is an archive and the memories shared its records—it is up to the visitor to discover the myriad of answers and memories they hold by asking questions. Through intimate visual, auditory and spatial storytelling, the installation allows survivors to revisit and communicate their own remembrances. Doing so enlightens the collective memory and creates perspectives of personal tragedies, resilience during the war, and even their present lives.

The installation’s value, that which represents some important aspect of the past for present and future users (Caswell, p. 8) lays in the ability of the memories to transcend time; it lays in the engagement fostered through virtual dialogue and facilitated by the technology. It is not the technology itself that makes the installation valuable, but the experiences being transported within it that allow the public to acquire these memories from the subjects themselves, possibly maintaining survivors’ memories alive, well past their material lives.

Although these survivors’ memories can now be kept alive through intimate and virtual dialogues, one must not forget the moral responsibility of creating these installations. According to Barbara Kirshenblatt-Gimblett, chief curator of the POLIN Museum of the History of Polish Jews in Warsaw, she hopes that future technological advances don’t overshadow the survivors themselves, stating that “What’s beautiful about this installation is that the survivors are front and center, they are charismatic and what they have to say is utterly compelling. (Matthews, 2017). Thus, computer scientists, archivists, and curators involved in creating these installations must continue to keep the value of their work front of mind, focusing foremost on representing the survivors and the memories, for of educative and experiential purposes.

For example, when Schloss and Gutter were filmed and recorded, several cameras were used to one day be able to represent these figures three-dimensionally. It is imperative that as technologies evolve, their stories and those of others in the future, whether two or three-dimensionally, continue to be told to advance historical understanding and remembrance. The focus of future installations must not be technology-centric in order to avoid deteriorating the subject’s memories and stories. It is crucial that the technologies not overshadow the context of the installation, but instead support the subjects’ memories to continue to provide historical understanding of a culture’s heritage.

As this sort of interactive storytelling technology becomes a more prominent way of preserving and disseminating digital cultural heritage, institutions, curators, and their teams might encounter obstacles pertaining to ownership and distribution of information. Although these institutions own the technology, can the memories and stories told by survivors be classified as proprietary? Specifically, will institutions claim them as their property, licensing and centrally controlling individuals’ memories and journeys? Additionally, as the technology evolves, will institutions disseminate the information to make it more widely available to schools, libraries and universities or will it be kept under lock and key only to be seen at curated installations? Although this technology advances the art of storytelling, lack of access for certain communities could limit its impact on preservation of cultural heritage.

Overall, New Dimensions in Testimony transforms the art of verbal storytelling from an ephemeral experience to a verbal, visual and spatial archive of stories and memories direct from the source. Such archives and records have the ability to change the concept of time and space by allowing the permanence of the interactions to exist into the future, way past the material lives of the subjects. According to Schwartz and Cook (2002), these spaces are the loci of power of the present to control what the future will know of the past (p. 13). Lack of access, though, can hinder its potential in preserving digital cultural heritage. It is the institutions that create such technologies that decide how much access they’ll give the public and in turn determine the real effects of using technology for fostering personal narrative and preserving a culture’s history.

References

New Dimensions in Testimony℠ — Museum of Jewish Heritage – A Living Memorial to the Holocaust. (n.d.). Retrieved from http://mjhnyc.org/exhibitions/new-dimensions-in-testimony/

Caswell, M. (Caswell, “The Archive” is Not An Archives: Acknowledging the Intellectual Contributions of Archival Studies. Reconstruction Vol. 16, No 1

Matthews, K. (2017, September 18). Exhibit allows virtual ‘interviews’ with Holocaust survivors. Retrieved from https://apnews.com/c17bb040aca6466f9c497050d404e79a/Exhibit-allows-virtual-‘interviews’-with-Holocaust-survivors

Schwartz, J.M., & Cook, T. (2002). Archives, Records, and Power: The Making of Modern Memory. Archival Science