Two weeks ago, The Museum of Modern Art Archives, Library, and Research Collections invited university students and faculty to come learn about the library and archives, what they have to offer, along with an introduction  to their online catalog. The event began with a series of presentations, an introduction to the Archives and Library, overviews and discussion of MoMA’s exhibition history pages on moma.org,       electronic resources, archival processing, library cataloging, and artists’ books. Before attending, I had     expected a very hands-on experience of the inner workings of the library and archive, gaining information about and insight into how they acquire and catalog their books, objects, and information. What I got instead was a comprehensive walk through of the MoMA’s online catalog and services available to the public both physically at the library as well as electronically.         

After introducing ourselves to the library staff and them doing the same with us, we were then introduced to the library; what it is, who can access it and how, and what is all in the library. An integral player in all this information is the MoMA’s online catalog. So what is there to know about MoMA’s library and their catalog? The most important thing to know about the MoMA’s catalog is not that it is completely online, nor is it the ease of searching everything from books to auction catalogs to archives. The most important part is that they decided to name it DADABASE and that is hilarious. In all seriousness what we learned as library and art history students about the DADABASE could easily be learned through some individual exploration of the museum’s page though often the existence of it falls under the radar of the average layman. That was a long-winded way of saying that I had no idea I had access to MoMA’s library and I had no idea what treasures it held and I am positive that I am not an anomaly in this scenario. It is a paradox of accessibility- a tool anyone can use, if only they know where to look for it.

Anyone who has access to a computer and internet has access to the DADABASE and anyone subsequently can make an appointment to see specific books or materials at the library through the website. We were shown during the meeting that the online catalog is much like any other online one search catalog. One of the librarians working at MoMA walked us all through searching the finding aids for the MoMA archives and their holdings.

As interesting and comprehensive as it is, the catalog is not perfect. We explored some of the errors in searching that can happen which are solves simply by being in the know, or of course consulting a librarian. In some cases, the catalog is tricky to search unless you are in the know about its organization. For example,  in the records for the finding aids in the archives section, the container lists, though mostly great,  if you search by the name of a person who was involved with press interviews you may get some results but others are hidden and more or less unsearchable. This flaw is due to the fact that the high volume of these interviews lead them to being cataloged by last initial. For example when looking through the Rona Roob Papers, and scrolling down to the “Collectors and Collecting,” a portion of this section stops being organized by individual collectors and begins with the truncated “collectors A-F.” The only way to find this document based on a collector that is in that “A-F” section is if you know the year and papers where the person you’re looking for would be recorded. The individual collectors in this section are not individually cataloged or tagged like in the sections organized by name instead of initial. This however, is really the only big flaw with how they online archive catalog is laid out and is easily solved by enlisting the help of one of the librarians.

Along with exploring and understanding the catalog and what is available to us as users, we learned about MoMA’s collection of artist books. They have a large variety of books that were created with the intention of being an artist book but some are a little more liminal. Something I found interesting and a bit unorthodox was how they decided to catalog artists books. Again, most are easy as most are sold and created as artists books but something MoMA does  differently is catalog books that aren’t artist books per se, but are instead artist books because they exhibit artistic elements. One example is a midcentury  advertising catalog  of which they have many issues. They would have the catalog regardless because it contains interesting and relevant information to MoMA but they decided to catalog it as an artist book instead of a magazine because the cover has interesting and unique design elements that were not necessarily common for a magazine of its type. 

The Museum of Modern Art Archives, Library, and Research Collections event was a little different than what I had gone in expecting. Regardless, I learned a lot about the MoMA archives that I truly wish I had known sooner. I know however, that they will be a great resource come thesis season for history of art grad students including myself.

Jen Romano–Bergstrom is a UX Research Lead at Instagram and Facebook. Some of her work currently involves survey design, usability testing, and writing. She is also known for using the research method known as eye-tracking to collect data based on human behavior. This technology now allows for users’ physical actions—all along with emotional responses—to be tracked for further analysis (Facebook Research, Person: Jen Romano–Bergstrom).

For a company and app like Instagram, this means they can determine what content users favor and how to guide them to it easily. The data is shared with influencers and advertisers. What does this mean to a regular user or the general public? Well, better placed ‘Like’, ‘Share’, and ‘Comment’ buttons…and ads, of course.

Furthermore, how would the methods employed in eye-tracking measure up to McGrath’s strategy circumplex in determining successful research on human behavior?

Generalizability

Romano-Bergstrom sums up that eye-tracking studies may be better for conducting research on those users who are not good with verbalizing their thoughts. The most notable (emphasized by Jen) is that people do not read dense text on Facebook and they only read what they need to read. Users are also reported to consume this content on mobile faster than they do on desktop.

The notable aspects of these summaries is that the Actors, in accordance with McGrath’s research strategies, cover a vast portion of the population. Evidence has been gathered between young and old, experts and novices, and mobile and desktop users in remote and lab settings.

Precision

Eye-tracking involves tracking users’ eye movements. Specifically, as users scroll through the apps, researchers can follow the linear movement of the eye and record lengths of time given to spans of attention versus gaze. This data can be represented virtually and in real-time. The maps created by the eye movement can be processed as video recordings or static images for later review.

There is a high level of control in recording the data represented: if the gaze falls of the screen, it can still be observed, but won’t affect the mapping process. The researcher can determine whether those ‘off-screen’ actions are relevant or not.

Realism

Researchers are also able to watch as users learn to interact with the product — something that can tell a lot about users’ behaviors. It is also valuable in the sense that testing can be accomplished successfully in unmoderated and remote testing.

Designers are able to test initial drafts by displaying screenshots and mock-ups on-screen that perform basic functions. Post-launch testing of features and things like copy, icons, placement  can also be administered.

The Dilemma

McGrath undoubtedly stresses that you cannot maximize all there criteria (McGrath 1994). In this case, the design of the eye-tracking research methods are well beyond flexible. 

There are three categories of the user experience data collected with Eye-tracking: Observational, Self-Report, and Physiological. Click patterns can be analyzed through observation. Meanwhile, users are more likely to think-aloud in a setting where eye-tracking is administered. They can report satisfaction and difficulty of the task more readily. If moderators are present, they have a chance to debrief the users. Tracking is also being expanded to include collection of emotional and electro-dermal activity through new quantitative/numerical coding.

From a physiological perspective, researchers can track the eye and observe what attracts users’ attentions. They can discover areas of confusion and/or interests. From this, designers and researchers can validate their updates to the content or the site’s interactive elements.

Sources

Facebook Research, Person: Jen Romano–Bergstrom. Retrieved October 27, 2017, from https://research.fb.com/people/romano-bergstrom-jen/

Jen Romano-Bergstrom, Incorporating Eye-tracking in UX Research to Inform Design (personal communication, October 11, 2017).

McGrath, J. (1994). “Methodology matters: doing research in the behavioral and social sciences.” Original paper. http://d.ucsd.edu/class/grad-IxD/2015/ private/readings/mcgrath_methodology_matters.pdf.

When does a book become a danger to itself? Franklin Furnace Archive deals with this question on a regular basis. Their growing archive consists of artists’ books that are made from a plethora of materials and take on many forms – making preservation difficult. On October 23^rd I attended the Archive’s open house to see for myself what these “books” look like and how they are stored.

The head archivist, Michael Katchen, opened with a brief history of the archive. Franklin Furnace Archive was founded by Martha Wilson in 1976, focusing on the collection of artists’ books and performances. In 1993, MoMA acquired their collection – contingent on certain terms, and in 1997 they transformed from a “physical exhibition space into an Internet-based one”¹. In 2014, the archive moved to its current home on the 2nd floor of the former building of Pratt’s School of Information.

The terms agreed upon in this 1993 acquisition are incredibly interesting: whatever books are accepted into the Franklin Furnace in the future have to be accepted into MoMA’s archives as well,becoming part of their permanent collection. So, what are the criteria for a book to be accepted? Michael says that as long as the artist believes that what they are submitting is a book, then it is so. This means that I could submit two copies of a work, in any form whatsoever, and finally get my work into MoMA.²

Michael went on to explain technical details about the archive; how items are preserved, and how items are accessed. The nature of the collection means preservation is challenging. Books in the collection may not resemble books at all, and their materials can degrade easily. Books that fit into certain dimensions are kept in phase box enclosures, others are kept in whatever containers they were sent in. An example of a more unorthodox enclosure were two “books” that Michael accepted into the archive last year. He walked over to a shelf and pulled down two plastic white paint buckets, opened them, and removed two paint-dipped tomes. They were more form than text, and totally unreadable, but they push what the boundaries of what an artists’ book can be.

Many of the older books and book forms have accompanying video documentation from related performances by artists, which are accessible through their online event archives³. The physical items from the early days of the archive have time-based media documentation attached to them. To preserve those films, Franklin Furnace has a digitizing workstation to produce preservation copies and DVD’s.

Edward Ruscha, Every Building on the Sunset Strip, 1966

Anyone can go to the archive and experience the books. The only requirement: a clean set of hands, and the whole archive is at your disposal. I was able to touch and flip through Ed Ruscha’s original 1966 work, Every Building on the Sunset Strip, which is a 25-foot long accordion-folded book. Michael’s estimate of the work: around $20,000 or so. It was an empowering experience to be in such close contact with the works at Franklin Furnace, and I appreciated how much access they grant to the public.

Below the strategically designed exhibits at the Metropolitan Museum of Art (MMA) lies a conservation student’s paradise: the Sherman Fairchild Center for Objects Conservation. I had the privilege of taking a personal tour of the objects conservation lab with Associate Conservator Anne Grady on October 28^th, 2017. As a prospective conservator, the inside look at the conservation lab was both exciting and enlightening. Each work station had a unique object in the process of being conserved. Objects ranged from an antique piano, to a Buddha statue, to stained glass windows, to a sarcophagus, to British couches and chairs. The stained glass window had been disassembled for cleaning and repair. The sarcophagus was being analyzed in order to reinforce weak areas and subsequently be returned to the Egyptian Wing for display. The furniture was being cleaned and prepared for display in the new British exhibit, which is set to open in 2019.

Ms. Grady was extremely knowledgeable and willing to share her personal stories and passion for conservation. She began the tour by discussing the broad history of conservation and how she became a conservator. Ms. Grady graciously shared an enlightening story from her fellowship time at the Met. She spent one year analyzing and conserving an 8’x4’ piece of wrought iron art that had previously been in storage. During the first two months, she analyzed the paint. She took cross-sections of the paint and determined that there were eight layers of paint. Before she could proceed with the conservation, she and a group of conservators and curators gathered to determine an appropriate course of action. As a group, they had to determine which color paint they preferred on the surface for the exhibit. They had to consider the context in which the object would be shown and they had to acknowledge that each paint color represented a piece of that object’s history. Each decision regarding the conservation of an object involves an ethical decision, especially when the work to be done is irreversible. Is it better to conserve an object and extend its life or let it decay as the artist had anticipated?

During the tour, Ms. Grady also mentioned how the conservators manage “difficult heritage” objects. She personally had not worked with any objects from indigenous peoples. She did mention that the conservator assigned to indigenous peoples’ objects consults the respective indigenous peoples whenever possible. This process ensures that appropriate conservation methods are utilized. When Ms. Grady mentioned consulting with indigenous peoples, I recalled a story that I previously shared on Twitter about the Smithsonian Institution collaborating with the Alaskan Tlingit tribe to create a replica of their sacred killer whale hat. It was comforting to know that the MMA takes appropriate measures when conserving indigenous peoples’ objects. Ms. Grady compared it to contacting an artist when they conserve that artist’s piece since their insight is extremely valuable to the conservation process. The most surprising element of my observation was when Ms. Grady informed the group that the Native American art had only recently been moved into the American Wing of the MMA. It had previously been displayed in the Art of Africa, Oceania, and the Americas Wing. The transition seemed a bit overdue and made me ponder as to why it had not always been displayed in the American Wing. I recalled the article “Is ‘Difficult Heritage’ Still ‘Difficult’?” where Sharon Macdonald discussed how museum exhibits can shape public memory of past atrocities. Macdonald stated that the “relatively durable physical crystallizations of particular ways of regarding the past provide a lens into what is deemed worthy of such effort” (2015, 7).  Exhibiting Native American art in any wing other than the American Wing of the MMA is denying that Native American culture is American. Macdonald considered the acknowledgement of difficult heritage as progress for aggressor countries. Therefore, I believe that Macdonald would view the recent relocation of the Native American art as a positive development in United States history.

I thoroughly enjoyed my tour of the objects conservation lab and aspire to return as a conservator in the future. The observation reinforced my desire to become a conservator and afforded me the opportunity to see the type of setting in which I could feasibly pursue my career. Ms. Grady also mentioned that the majority of conservators currently working at the MMA are white females from the northeast. Much like the libraries studied in Jennifer Vinopal’s article “The Quest for Diversity in Library Staffing: From Awareness to Action,” the conservation department at the MMA lacks diversity (2016). Fortunately, this fuels my pursuit of a career as a conservator and only inspires me to continue my quest.

Macdonald, Sharon. 2015. “Is ‘difficult heritage’ still difficult?” Museum International 67: 6-22.

Solly, Meilan. 2017. “This Replica of a Tlingit Killer Whale Hat Is Spurring Dialogue About Digitization.” Smithsonian.com. https://www.smithsonianmag.com/smithsonian-institution/replica-tlingit-killer-whale-hat-spurring-dialogue-about-digitization-180964483/.

Vinopal, Jennifer. 2016. “The Quest for Diversity in Library Staffing: From Awareness to Action.” Lead Pipe. http://www.inthelibrarywiththeleadpipe.org/2016/quest-for-diversity.

I have been going to ICP, the International Center of Photography, since I was a teenager in the 1990’s.  A friend was taking black and white photography classes there and I would sneak in with her to use their darkrooms, which were housed the basement of the Willard D. Straight house on the upper east side of Manhattan.  I was excited to see their new collection facility at Mana Contemporary, where they moved to in 2015.

I met with Claarkje Van Dijk, the Assistant curator of collections, who graciously walked me through the facility and answered my litany of questions (although this was an observation, I couldn’t help my curiosity).  She detailed the history of how the collection ended up at Mana Contemporary, a behemoth 19th century former tobacco factory in Jersey City.

Founded in 1974 by photographer Cornell Capa as the Foundation for Concerned Photography, ICP’s mission is to promote photography as an instrument of social change, primarily through documentary photography.  The image collection started as a way to archive and house Cornell’s work as well as his late brother Robert Capa’s canon of images, which cover some of the most significant documentation of war in the 20th century, including his iconic D Day images.  Notably, ICP does not like to use the word “photojournalism”, perhaps because they do not see their collection as “neutral”.  Their selection “Images of Social Change” exemplifies ICP’s depictions of the brutality of war, racism, and poverty. Over the next two decades ICP grew to encompass a school, museum and library that also pursue photography as an instrument of progress.

From 2000 until 2015 all of ICPs departments were housed together in several midtown buildings, in part thanks to a sweetheart deal of $1 in rent per year courtesy of the Durst Realty corporation (yes that Durst family).  During this time the archive grew exponentially to nearly 200,000, items from around the world spanning the nearly 200 year history of photography. They have a daguerrotype from the 1840s through to work that was produced this year.  This includes images in various formats – negatives, contact sheets, prints, magazines, and framed work encompasses every style and genre of photography. One thing I found extremely interesting is that ICP wouldn’t consider digital work that did not have a physical form until 2009 or 2010.  They have only really begun collecting “solely digital” work in earnest in the last two years.

With the expansion of the collection arose the inevitable space issue of all collections. The cost of keeping the archives in Manhattan made little sense, so when the museum was relocated to the Bowery (near the New Museum), the collection moved to Mana. It was chosen because of it’s considerable size and accessibility to Manhattan by the PATH train.  They are in good company at Mana; other tenants include Magnum, the storied photo agency founded by Herni Cartier-Bresson – Magnum and ICP share copyright requests on the Capa brothers’ images, and on the famed street photographer Weegee’s images – and The NY Historical Society.

The space is on the 6th floor of the building, which can only be reached by a single, imposing freight-style elevator that creeps along nervously.  The ICP office, however, has the modern open-air-meets-brick-wall style of a SOHO loft.  The collection is housed in an enormous windowless room with glass on one side overlooking a conference room and offices. The entire room is filled with row after row of industrial racks that nearly reach the ceiling.  The print collection is mostly stored flat in traditional gray and beige archival boxes stacked neatly on shelves and arranged mostly by last name of photographer. Larger framed images are stored vertically in bays at the back. As with most archives, cataloging of the material is in a perpetual state of updating and revision.

The process of digitizing the entire archive is also ongoing.  They have a digital archivist whose sole job is scanning the collection and entering it in the database in basic form.  Additional details and keywords are added later by other staff and interns. They use The Museum System as their management software and currently they have over 90,000 images digitized in hi res, stored on remote servers, and available to the public in low res on their website for educational purposes. Considering the caliber of photographers they represent and the iconic nature of many of the images it is remarkable to me that they have un-watermarked images online, even in low resolution.  When I mentioned this to Claartje she said ICPs mission of public education  and access pushed them to make the collection digitally accessible at the risk of losing complete control.

I was curious how ICP decided, in this age of unlimited imagery, what to add to its collection moving forward.  Three times a year the curatorial staff have acquisition meetings where they propose works to a secret committee.  While the collection’s holdings were focused primarily on documentary photography from the 1940’s – 1970’s for many years it gradually expanded to include street photography, fashion, fine art, color, abstract works, and even some illustration. The chief curator, Brian Wallis, has made a point of looking to fill niches that are not collected elsewhere – a recent acquisition is a series of Soviet picture magazines.

Another is a collection of more than two thousand vernacular photography items, including postcards, cartes-de-visites, and portraits collected by Daniel Cowin depicting African American life from 1880 through the 1930. Nearly all of the subjects’ identities are unknown in a collection like this and were more than likely taken without any consideration of an afterlife in a museum collection.

This is an issue of particular complicating ethics in photography.  As in the discussion of consent in “The Ethics of Fieldwork” regarding research subjects, a willing participant is entrusting a piece of their identity with the photographer. An unwilling (or unaware) subject is entirely without control so the value of what the person depicts or represents must be weighed with consideration to any violation of privacy or personhood. Whomever possesses the photograph will make decisions with consequences for the subjects of that image, and there is often no clear answer as to what is “more ethical” in documentary photography . This photograph by Nick Ut, included in ICPs database, exemplifies to me the tension between exposing history and exposing individual people.

ICP seems to be acutely aware of the ethical responsibility their collection entails and indeed sees the context in which it represents their images as crucial to remaining mindful of the images subjects. In a time of infinite imagery, a curated perspective such as this seems all the more needed.

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