It’s no secret that we now live in an era of information sharing, and that such sharing not infrequently includes personal medical details. To cite one example: in the wake of the Cambridge Analytica Facebook data scandal, New York Times staff editor Kathleen O’Brien wrote an article entitled “I Can’t Jump Ship From Facebook Yet”  (April 14, 2018). The gist of this piece was that parents of children with various psychiatric or rare medical conditions find solace on social media. As she puts it,
 
For me, user-created Facebook groups for special-needs parents function like a very convenient support group you can check in with as your time-crunched life permits. People share recommendations and advice. They vent about schools, health insurance and daily life. I am not even that active in these groups, but it’s reassuring to hear from other parents, even just online.
 
This is emblematic of the kind of voluntary release of private medical information that occurs online. Ms. O’Brien has publicly identified her son as autistic.  She continues in the article to discuss other people by name and to reveal the rare medical conditions from which their children suffer.
 
Additional examples of this kind of sharing abound. A casual scroll through one’s Facebook feed frequently yields a number of friends who are, ostensibly in the service of ‘reaching out’ for (or conversely, providing) the kind of support that O’Brien talks about, discussing their own mental or physical health. Everything from insomnia to anxiety to depression to MS to thyroid conditions is fair game on social media. In addition, seemingly innocuous screening tools often pop up, as well as cute quizzes that purport to give various diagnoses or risk assessments.
 
Add to all of this the various tracking apps – everything from fitness trackers that measure one’s steps to location services that log one’s every move – and it becomes clear that we as a society have voluntarily surrendered vast quantities of information about our physical and mental health to anyone interested in acquiring it. And not just our own information – in the case of Ms. O’Brien and others like her, information about our children.
 
We are accustomed to thinking of our medical records as private; in fact, there are laws governing this kind of privacy. But we fail to see that once everything is online and out of our hands, it becomes fair game for abuse.
 
Many people no doubt see this concern as excessively paranoid. What possible use could anyone make of my pedometer information other than to try to sell me running shoes, I might wonder. 
 
But this complacency overlooks the extremely dark history of the way in which medical information has been used in the service of forced sterilization, torturous ‘experimentation,’ and euthanasia and extermination. The most egregious example of this is the Nazi eugenics program, a program that many Americans are unfortunately unaware of.
 
According to Rael D. Strous, M.D., in his article “Hitler’s Psychiatrists” (Harvard Review of Psychiatry, 2006), “Indeed, perhaps more than other medical specialties, psychiatry and psychiatrists played a pivotal role in the Nazi extermination machine—from the selection, identification, and labeling of mentally ill individuals marked for murder to the actual facilitation and supervision of their eventual murder through what came to be a highly sophisticated and efficient extermination process” (31).
 
It is important to note the ‘selection, identification, and labeling’ aspect of this process. In order to carry out their program of ‘racial cleansing,’ the Nazis had first to determine who among them were the ‘impure’ individuals who were compromising the ‘health’ of the German populace. They had to determine whose lives were not worth living, and they did so by means of medical records.
 
It is further important to point out that these cooperating medical professionals most likely did not see what they were doing as problematic. Indeed, they were committed to a cause that made perfect sense to them. Unless we learn about and fully confront the logic of their cooperation, we cannot recognize the same impulses at work in our society today.
 
Again, according to Strous, “Many of the scientists were acting according to what they considered to be the genuine interests of society,” and “all psychiatric institutions readily acquiesced in the request to provide lists of those who were hospitalized for over five years, criminal mentally ill, or not employable” (32).
 
Thus, we see two significant points here: first, that medical professionals thought what they were doing was right, and second, that they made use of medical records to make their determinations.
 
It might therefore be prudent to ask ourselves whether it is really harmless to have surrendered data about our mental and physical health to forces we cannot identify. The Cambridge Analytics breach permitted the political campaign of Donald Trump to obtain this kind of information. That means that the current government can, if it so desires, compile lists of U.S. citizens with various self-identified medical conditions. Presumably, our government might know what medications we take, what our blood pressure readings and cholesterol levels are, and what kind of risk for dementia we have. And that is just one stakeholder that we are aware of – all kinds of other entities may have this data by now.
 
What prevents them – or anyone – from deciding that, for the good of the society, we cannot use limited resources to maintain the lives of people whom they determine to be non-productive or potentially harmful? It is now too late to erase the digital footprints we have left all over the internet; it might behoove us to start thinking about both our future behavior and ways to protect ourselves from potential abuses.
 
Beyond that, though, we must be wary. We must be on our guard for any signs that our nation is going down the path that the German people so blithely traversed in the 1930s. Are there signs that this is happening? What might they look like?
 
I would suggest that there are three. First, there must be a nationalistic movement that seeks to return to an imaginary Golden Age and that defines the ‘true’ members of the nation in specific ways that marginalize vulnerable populations. Second, there must be a sense that economic resources are limited and cannot be ‘wasted’ on unproductive members of society. And third, there must be ways of identifying and categorizing ‘undesirable’ persons such that they can be targeted for discrimination.
 
I have suggested here that the third point is already very much in play, and that we have identified and categorized ourselves voluntarily, making it extremely easy for unscrupulous parties to sort us for their own ends. This is already happening. I believe that sufficient evidence for the first two conditions exists as well, but that is beyond the scope of what I address today.
 
At the very least, we must, as I’ve suggested, be cautious about sharing our personal medical information and be on our guards as to ways that it could be abused. And in order to convince the younger members of our society of this potential danger, it is absolutely essential that we teach them about the eugenics movement and its role in setting the stage for the Holocaust. We ignore this history at our peril.

Nancy Rehm spent 31 years teaching in the Pennsylvania public school system. She has taught everything from first grade through college. The last 22 years of her career were spent at the high school level, where she created and ran a unique integrated humanities program for gifted students focused on connections among various disciplines, including literature, philosophy, history, science, and the arts. She has certificates in both secondary English and K-12 Special Education, and holds a Masters Degree in Special Ed. An artist and a writer as well, she now lives in Dallas, PA. 

The results of a recent study published in the New York Times confirm that there is a lack of basic knowledge regarding the Holocaust among most Americans.  The study also showed that the vast majority of people believe that Holocaust education should be mandatory.  MIMEH firmly agrees with this viewpoint, and we are actively working towards the creation of materials that can be used as part of a required curriculum on the Holocaust.

We also recognize that large-scale change takes time.  Our challenge thus becomes figuring out how to bridge the gap in Holocaust education while working towards a mandatory inclusion of this topic within educational systems.  MIMEH is committed to meeting this challenge head on by developing new and innovative methods for ensuring that the memory of those who perished during the Holocaust is not forgotten, but rather serves as a reminder of what can happen when we don't respect the basic human dignity inherent in all people.  Understanding the role of medical ethics during and after the Holocaust is an essential part of our mission of reflecting on the past to protect the future. 

In the coming weeks and months, MIMEH will be introducing new initiatives aimed at reaching a broader audience.  Our goal is to transcend the traditional barriers of Holocaust education - age, religion, geographic location, etc. - to provide resources and materials for ALL people.  We will begin by introducing a guest blogger series where people who are interested in this topic can contribute blog posts for possible publication on our website.  This will provide a forum for both academics and laypeople to engage in a respectful discourse on the topic.  It will also allow for an examination of the nuances of medical ethics during and after the Holocaust.   

Our first guest blog post, "The Importance of Teaching the Holocaust in the Information Age" explores the relationship between the use of medical records to label and persecute people during the Holocaust and the potential dangers that accompany revealing private medical information on social media and other internet forums.  Look for this blog post to be published in the next few days.  We hope it inspires you to join the conversation.

A new study published in the New York Times revealed some alarming facts about Holocaust education:

• 31% of Americans and 41% of millennials (ages 18-34) believe that 2 million or fewer Jews were killed in the Holocaust.
• 41% of Americans and 66% of millennials cannot say what Auschwitz was.
• 52% of respondents wrongly believe Hitler came to power through force.

There were, however, a few bright spots among the survey:

• 93% of respondents think all students should learn about the Holocaust at school.
• 96% of respondents believe the genocide happened.

This survey shows a startling lack of knowledge about the Holocaust as we get further away from the actual event.  However, it also shows that there is a desire among Americans to learn more about the Holocaust.  Thus, it is incumbent upon institutions like MIMEH to keep finding ways to offer accurate educational programming to a broad audience in order to bridge the knowledge gap.  In the coming months, MIMEH will be launching several unique programs that aim to reach millennials by providing unique experiences that will speak directly to the younger generation.  We hope to do our part to remedy the lack of knowledge made apparent by the survey and invite you to join us on this increasingly important mission.

Read the full article by Maggie Astor here:

​www.nytimes.com/2018/04/12/us/holocaust-education.html

The Maimonides Institute for Medicine, Ethics and the Holocaust is proud to announce a partnership with CANDLES Holocaust Museum and Education Center, effective February 1, 2018.  CANDLES is a nonprofit organization founded by Holocaust survivor, Mengele twin, and forgiveness advocate Eva Mozes Kor whose mission is to shine a light on the story of the Holocaust and Eva Kor and to illuminate the world with hope, healing, respect, and responsibility.

Ms. Kor's experience as a survivor of Mengele's twin experiments offers a firsthand account of the ways in which the medical community participated in the dehumanization and torture of millions of innocent people during the Holocaust.  We hope to share Ms. Kor's story to help people understand the importance of studying the Holocaust as the historical framework for current issues in modern bioethics, health care policy and medical practice. 
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MIMEH and CANDLES will be joined in this important endeavor by Misericordia University's Center for Human Dignity in Bioethics, Medicine, and Health.

On January 29, 2018, the Maimonides Institute for Medicine, Ethics and the Holocaust, The Center for Human Dignity in Bioethics, Medicine, and Health at Misericordia University, CANDLES Holocaust Museum and Education Center (founded by Holocaust survivor Eva Mozes Kor), and the Department of Bioethics and the Holocaust of the UNESCO Chair of Bioethics (Haifa) launched an international movement to preserve human dignity in health care.  This full day event held at Misericordia University included lectures by internationally renowned scholars Dr. Susan Miller and Dr. Tessa Chelouche, as well as an interfaith candle-lighting ceremony commemorating the victims of the Holocaust and other instances of abuse perpetrated by the medical community.  The featured event was the launch of the Pledge to Preserve Human Dignity in Health Care, a document which reaffirms our societal commitment to keeping the ethical principles of equality, justice, and dignity at the forefront of health care.  Hundreds of people from over 20 states and 8 countries have signed the document.  

The Center for Human Dignity in Bioethics, Medicine and Health at Misericordia University invites all interested people to the inaugural "Commitment to Preserve Human Dignity in Health Care" event on Monday, Jan. 29 from 5-6:30 p.m. in Lemmond Theater in Walsh Hall.
The highlight of the program is a first-of-its-kind interactive ceremony to Pledge to Preserve Human Dignity in Health Care. Everyone in attendance will be invited to promise to "uphold the values of dignity, equality and justice within health care." Those taking the pledge will receive a pin they can wear to show their respect for the dignity of all patients.

Program sponsors include the Maimonides Institute for Medicine, Ethics and the Holocaust in New Jersey; the Department of Bioethics and the Holocaust of the UNESCO Chair of Bioethics located in Israel; the CANDLES Holocaust Museum and Education Center founded by Holocaust survivor Eva Mozes Kor and located in Indiana; the Ethics Institute of Northeastern Pennsylvania at Misericordia University; and the Medical Health and Humanities program at Misericordia University.

The program includes an ecumenical candle lighting ceremony with representatives of numerous religious traditions to honor victims of medical science, and presentations about medical science and bioethics by two internationally known speakers. The events are timed to commemorate International Holocaust Remembrance Day on Jan. 27. Additional information about the program's schedule is available at https://www.misericordia.edu/page.cfm?p=2336.

"Our program will serve as the start of a movement that aims to reach everyone throughout the world, both those within the health care profession and others," said Stacy Gallin, D.M.H., director of the Center for Human Dignity in Bioethics, Medicine and Health at Misericordia University. "We are asking them to reflect upon what took place during the Holocaust, what has continued to take place, and vow to use those lessons to reaffirm a societal commitment to preserving human dignity in health care around the world.

"To protect the future, we must learn from the past. It is our hope that universities around the world will join us in having students sign the newly developed 'Pledge to Preserve Human Dignity,' much like doctors and nurses do at their white coat and pinning ceremonies," added Gallin, who is known internationally for her work as the director of the Maimonides Institute.

David Rehm, Ph.D., vice president of Academic Affairs at Misericordia, echoes Gallin's comments. "The scholarly literature on medical science has, since at least the 1980s, called for an annual commemoration to reflect upon the responsibilities and challenges of the medical profession. Misericordia is taking the bold step of putting into action this recommendation. We are proud to be hosting this event," he stated.

"These events are the first in a series of programs that will be held in conjunction with the UNESCO Chair of Bioethics and CANDLES to grow the 'Movement to Preserve Human Dignity in Health Care' through various other like-minded national and international organizations," added Gallin. "Being able to hear from two of the most recognized speakers in the world on bioethics will make for a very special launch to the movement."

Tessa Chelouche, M.D., the director of primary care medical practices at Tel Aviv University, an internationally recognized speaker on the subject of medicine and the Holocaust, will serve as keynote speaker. She will present the talk, "Reflecting on the Past to Protect the Future: Medical Ethics and Human Dignity after the Holocaust."

A native of South Africa, Dr. Chelouche immigrated to Israel in 1977, where she practices as a family physician. She graduated from the Sackler School of Medicine at Tel Aviv University Medical School in 1984. Dr. Chelouche teaches family medicine residents for the Tel Aviv University Family Medicine Program. For the past 17 years, she has been teaching and lecturing on the subject of medicine and the Holocaust. Dr. Chelouche has published numerous articles in international medical and law peer-reviewed journals, and has presented at international conferences and medical schools.

In 2013, Dr. Chelouche co-edited the "Casebook on Bioethics and the Holocaust," which was published under the auspices of UNESCO Chair in Bioethics in Israel. She is affiliated with The International Center for Medicine, Law and Ethics at Haifa University. Dr. Chelouche has been the co-director of the Maimonides Institute for Medicine, Ethics and the Holocaust since its inception in 2015. In 2017, she and Dr. Gallin co-founded the Department for Medicine and the Holocaust as part of the UNESCO Chair in Bioethics, Haifa.

In addition, Susan M. Miller, M.D., M.P.H., F.A.C.P., F.A.A.F.P., will attend the pledge event and will present the address, "Medical Experimentation during and after WWII," at a Bring-Your-Own-Lunch lecture at noon in Huntzinger and Alden Trust rooms 218-219 of Sandy and Marlene Insalaco Hall. Both events are free and open to the public. Dr. Miller is the John S. Dunn, Senior Research Chair in General Internal Medicine at the Houston Methodist Research Institute.

Dr. Miller is an associate professor at Weill Medical College, Cornell University. She is a professor in the Department of Family Medicine and a professor of clinical medicine at the Institute of Academic Medicine, Houston Methodist Research Institute. She also serves as the deputy chief in the Department of Family Medicine at The Methodist Hospital. Dr. Miller is currently the senior chair of the Institutional Review Board of the Methodist Hospital Research Institute and is the director of the Chao Program for International Research Ethics.

Dr. Miller has provided consultation work to health care institutions in Central and Eastern Europe, Russia, Cameroon, the Philippines, South Korea, and Monterrey. She is a board member for the Center for Medicine After the Holocaust in Houston and the Maimonides Institute for Medicine, Ethics and the Holocaust. She is a co-founder of the Center for Medicine after the Holocaust-Ukraine, where she is also a board member of the Scientific Council of the Informational Center of Bioethics – Ukraine.

The Center for Human Dignity in Bioethics, Medicine and Health at Misericordia University was established in September. The center fosters the study of medical ethics and the boundaries of medical research practices, and builds on the teachings offered in the university's Medical and Health Humanities Program.
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For more information about the center or the pledge program, please contact Stacy Gallin at sgallin@misericordia.edu or visit www.misericordia.edu/humandignity.