THE INSTITUTE FOR ETHIC AL LEADERSHIP AND SOCIAL RESPONSIBLIT Y at Rosemont College
Spring
2017 | Issue 6
The Institute for Ethical Leadership and Social Responsibility
Co-Director’s Welcome Welcome to Ethics and Emerging Medical Technologies: A Symposium. The Institute for Ethical Leadership and Social Responsibility at Rosemont College is proud to sponsor today’s event. The past decade has witnessed ever-increasing advances in innovative medical technologies including gene-editing, robotic surgery, novel pharmaceuticals, 3-D bio-printing and other forms of personalized medicine. One recent example that made headlines is the CRISPR genomic-editing technique, which Science magazine called the “breakthrough of the year” in 2015, identifying it as one of the most important tools invented in the past century. Such innovations have the potential for vastly improving human health and medical care in ways unimaginable in the not too distant past, through tissue-based treatments for cancer and other diseases, the growth and transplantation of animal organs, and repairing genetic defects in embryos. As is often the case with emerging technologies, with the potential benefits come a host of ethical questions concerning their development and implementation: Does altering the human germ line cross a moral threshold? Is “human enhancement” a moral imperative? Will access to such technologies and treatments be problematic for certain social, economic, and racial groups? How will healthcare policy take into consideration the widest possible range of stakeholder perspectives? We are delighted to have with us a group of nationally and internationally recognized experts in medical technology, bioethics, and health care. An opening keynote presentation will be followed by three breakout sessions and a culminating panel discussion. For all the latest on Institute programming and initiatives, please visit our website a trosemont.edu/ethics.
Alan A. Preti Co-Director, Institute for Ethical Leadership and Responsibility
Col. Timothy Ringgold Co-Director, Institute for Ethical Leadership and Responsibility
The title of this publication - Ethos - is the ancient Greek word for ‘character,’ and the root of ethikos, from which the English ‘ethics’ is derived. A central moral concept, an individual’s ethos is his or her credibility or trustworthiness, while a community’s ethos is manifested in the beliefs, practices, and ideals which provide its members with meaning and shared purpose. We look forward to the ethos of the Institute being a guiding light for the College and the greater community in the years ahead.
Major support for this Symposium and the Institute is provided by Halloran Philanthropies and individual donors.
Institute for Ethical Leadership and Social Responsibility ETHOS STAFF Editorial Director Alan A. Preti, PhD DESIGN AND ILLUSTRATION Susan DiGironimo WRITERS Jonathan D. Moreno, PhD Eric B. Kmiec, PhD Joseph S. Camardo, MD Alan A. Preti, PhD
|3
PHOTOGRAPHY John Michael Szczepaniak-Gillece PRINTING Garrison Printing Company @ 2017 Rosemont College Ethos is published by the Institute for Ethical Leadership and Social Responsibility and the Office of College Relations. Communications regarding the contents of Ethos should be directed to the Institute for Ethical Leadership and Social Responsibility, 1400 Montgomery Ave., Rosemont, PA 19010 or ielsr@rosemont. edu. To support the Institute or to learn more, please visit www.rosemont.edu/ institute.
Jonathan D. Moreno, PhD
|5
INTERNAL ADVISORY BOARD Steven Alessandri, PhD Associate Professor of Psychology Troy Chiddick, MBA Dean of Students, Undergraduate College Jeanne Marie Hatch, SHCJ, MA Vice President of Mission and Ministry Jennifer Jackson, PhD Assistant Professor of Theology and Religious Studies
Human Gene Editing: The Ultimate Genetic Spellchecking Program
Eric B.Kmiec, PhD
| 11
Adam Lusk, PhD Assistant Professor of Political Science Michelle Moravec, PhD Associate Professor of History EXTERNAL ADVISORY BOARD Joseph Camardo, MD Maureen Caulfield, MD Peter Clark, SJ, PhD Juliet Goodfriend Harry R. Halloran, Jr. Tom Handler Irene Horstmann Hannan
Chris Lowrey
| 13
Joseph S. Camardo, MD
Alan A. Preti, PhD
| 17
| 15
Jonathan D. Moreno, PhD is the David and Lyn Silfen University Professor at the University of Pennsylvania where he is one of sixteen Penn Integrates Knowledge professors. At Penn he is also Professor of Medical Ethics and Health Policy, of History and Sociology of Science, and of Philosophy. His online neuroethics course drew more than 36,000 registrants in fall 2013. Moreno has served as an advisor to many governmental and nongovernmental organizations, including the Department of Defense, the Department of Homeland Security, the Department of Health and Human Services, the Centers for Disease Control and Prevention, the Federal Bureau of Investigation, the Howard Hughes Medical Institute, and the Bill and Melinda Gates Foundation. Moreno is an elected member of the Institute of Medicine of the National Academy of Sciences and is the U.S. member of the UNESCO International Bioethics Committee. He has served as a senior staff member for three presidential advisory commissions. In 2008–09, he served as a member of President Barack Obama’s transition team. He holds a PhD from Washington University in St. Louis, was an Andrew W. Mellon postdoctoral fellow, was awarded an honorary doctorate by Hofstra University, and is a recipient of the Benjamin Rush Medal from the College of William and Mary Law School and the Dr. Jean Mayer Award for Global Citizenship from Tufts University. A frequent contributor to such publications as The New York Times, The Wall Street Journal, The Huffington Post, Psychology Today, and other major media, his work has been cited by Al Gore and was used in the development of the screenplay for “The Bourne Legacy.” Moreno has published about 300 papers, reviews and book chapters, and is a member of several editorial boards. His most recent book is The Body Politic: The Battle Over Science in America (Belleview Literary Press, 2011), a Kirkus Reviews Best Book of the Year and a Scientific American Book Club selection. The American Journal of Bioethics has called Dr. Moreno “the most interesting bioethicist of our time.”
the most interesting bioethicist of our time - American Jounal of Bioethics
3
|
Ethos
Rosemont College
Ruha Benjamin, PhD is Assistant Professor of African American Studies at Princeton University and a 2016-17 fellow at the Institute for Advanced Study in Princeton, NJ. Her work examines the social dimensions of science, technology, and medicine with a particular focus on issues at the nexus of innovation and equity. She received her PhD in Sociology from UC Berkeley, completed fellowships at UCLA’s Institute for Genetics and Society and the Harvard Science, Technology, and Society Program, and has received grants and fellowships from the American
Council for Learned Societies, National Science Foundation, Ford Foundation, and California Institute for Regenerative Medicine. Her work is published in numerous journals including Science, Technology, and Human Values; Ethnicity and Health; and Annals of the American Academy of Social and Political Science. Dr. Benjamin is the author of People’s Science: Bodies and Rights on the Stem Cell Frontier (Stanford University Press, 2013).
Sarah-Vaughan Brakman, PhD is Associate Professor of Philosophy at Villanova University and a practicing clinical ethics consultant who is known nationally and internationally for her expertise in clinical medical ethics and in the ethics of embryo donation. The founding director of the Ethics Program at Villanova, Dr. Brakman holds the Anne Quinn Welsh Faculty Fellowship in the Honors Program. She earned her master’s and doctoral degrees in philosophy with a specialty in medical ethics through a joint program of Rice University and Baylor College of Medicine. Dr. Brakman’s work on filial obligation
and long-term care policy, decision-making for individuals with developmental disabilities, ethics in assisted reproductive technologies and adoption ethics has appeared in many scholarly books and journals. She is co-editor of The Ethics of Embryo Adoption and the Catholic Tradition (Springer, 2007). Dr. Brakman is the ethics consultant and chair of the National Ethics Committee of Devereux, the nation’s largest nonprofit provider of behavioral and mental health care.
Eric B. Kmiec, PhD is founding Director of Christiana Care Health System’s Gene Editing Institute, a core facility providing genetic tools for gene editing as well as instruction in the design and implementation of these tools for collaborators and colleagues nationwide. Dr. Kmiec is well-known for his pioneering work in the fields of molecular medicine and gene editing. Throughout his professional career, he has led research teams in developing gene editing technologies and genetic therapies for inherited disorders such as Sickle Cell Disease. He is the recipient of multiple research awards from the National Institute of Health, the American Cancer Society, and private foundations including the 2012 Proudford Foundation Unsung Hero Award
in Sickle Cell Disease. He has been a member of numerous editorial boards, NIH study sections and review boards and is the primary author of more than 145 scientific publications (mostly in genetic recombination and gene editing). Dr. Kmiec holds 18 issued patents, most of which have been licensed by biotechnology and pharmaceutical companies, and has founded two biotechnology companies. He has held or holds major administrative posts in various NIH regional and state biomedical research grants, including IDeA Network of Biomedical Research (INBRE) and Centers of Biomedical Research Excellence (COBRE).
www.rosemont.edu/ethics | 4
The Institute for Ethical Leadership and Social Responsibility
Jonathan D. Moreno, PhD
5
| Ethos
Rosemont College
In 2014 Secretary of Defense Chuck Hagel described a new “gamechanging offset strategy” intended to counter a new generation of disruptive technologies being developed by China and Russia, innovations that could undermine US military advantages. Secretary Hagel’s strategy has come to be known as the third offset, following in the line of the Eisenhower administration’s “New Look” that emphasized massive nuclear retaliation and the Carter administration’s “Offset Strategy” that led to precisionguided munitions like laser-guided “smart bombs” and computerized commandand-control systems. These technologies were cutting edge in their day, but in the past two decades possibilities have emerged that require new ways of thinking about defense research and development, particularly in the life sciences. So far the concept of a third offset seems mainly to be a convenient handle for a menu of new defense capabilities, many based on the convergence of neuroscience and engineering. These novel capabilities include autonomous “deep learning” machines and systems for early warning based on crunching big data, human-machine collaboration to help human operators make decisions, assisted-human operations so that humans can operate more efficiently with the help of machines like exoskeletons, and advanced human-machine teaming in which a human works with an unmanned system. Notably, all of these technologies involve a combination of applied neuroscience and engineering. For example, so-called autonomous systems may benefit from software that has been developed with improved knowledge derived from basic science about how the brain processes information. Although the brain is often called a computer, it is more accurate to say that the brain is an evolved biological system that computes while it adapts. The adaptive abilities of the brain are the salient properties that underlie deep learning and set it apart from artificial systems that have historically been “dumb,” relying on their original programming. As a colleague at the University of Pennsylvania remarked to
me a few years ago, Google has much more memory than humans do, but the software is not as good. There is currently an argument not only about whether offensive autonomous weapons systems can be accountable but also whether they can be controlled (leaving aside all the technical and epistemological issues about the meaning of autonomy in this setting). A system capable of making suitably complex decisions independent of a human operator could challenge conventions about accountabil-
the brain is an evolved biological system that computes while it adapts.The adaptive abilities of the brain are the salient properties that underlie deep learning and set it apart from artificial systems that have historically been “dumb,” relying on their original programming. ity. That is a solvable problem; presumably new conventions for the laws of autonomous armed conflict can be devised. Some have suggested that, far from creating new problems for commanders, these complex devices can have ethics rules built into their programming so they will be less likely to violate military ethics than humans. However, the philosopher Nick Bostrom, in his book Superintelligence: Paths, Dangers, Strategies, has argued that silicone-based machine intelligence is not only inevitable but inher-
www.rosemont.edu/ethics | 6
The Institute for Ethical Leadership and Social Responsibility
ently quite dangerous, whether in the context of armed conflict or not. An intelligent machine that is equipped with adaptive deep learning could both program itself and develop other machines it could integrate into its system, thereby vastly expanding its computational capacity to the point that it would achieve what Bostrom calls superintelligence. Suppose such a device were to develop certain goals that would serve the completion of its computational task—for example, the solution of a seemingly impossible mathematical problem. In that case it could in principle subjugate every bit of matter on Earth—and perhaps beyond— to the job of information processing. Such an outcome would mean not only that human beings would be entirely dependent on the superintelligence for their survival but could lead to the end of human life itself. This doomsday scenario is met with skepticism among computer scientists—who regard their devices as exceptionally vulnerable to hacking, plug-pulling, or even a swift kick—and by biologists, who do not believe any inorganic system can master all the skills of even a fairly simple biological brain. By contrast, human-machine collaboration is already here, from iPhones pulling information off the cloud to augmented, reality-equipped visors to military pack animals like Boston Dynamics’ “Big Dog” (though the prototype needs to get a lot quieter to be viable for its intended purpose). But these devices require the use of eyes and hands and entail some delay in response. Some medical devices are implantable and respond immediately, such as intracardiac defibrillators for patients at risk of heart attack and cochlear implants for those with hearing impairments. In neuroscience, strides have been made with brain implants to relieve symptoms of movement disorders and perhaps even depression. Currently these chips have only 96 electrodes, but the Defense Advanced Research Projects Agency (DARPA) is supporting work on a new implantable array for brain implants that would include hundreds of thousands of electrodes. Clearly, advances in material science will be required to achieve that goal, but if these super neural chips
7
| Ethos
can be developed and safely introduced into the brain with reliable results—all very high bars—the relationship between an operator and a machine will be utterly transformed (think Clint Eastwood’s robotic airplane in the film Firefox). At that point we would be led to ponder important questions about the nature and limits of the human being in relation to the machine. Not all neurotechnology-related developments entail such a high level of advanced science or engineering. According to some, improved decision making and accelerated learning can be achieved with relatively simple neural stimulation devices used in the right way. A number of studies have reported that a painless technology called transcranial magnetic stimulation (TMS) can improve visual perception in healthy people.1 In TMS, a magnetic coil is placed above the head, and electrically produced magnetic pulses pass through the cortex. These pulses can alter the firing rate of certain neurons. Researchers hope that TMS may someday be used to treat stroke patients or those with dementias or depression. can be developed and safely introduced into the brain with Research also suggests that TMS could help healthy people reliable results—all very high bars—the relationship between benefit from better-than-normal visual perception. The milian operatorand a machine will be utterly transformed (think tary application is provocative: soldiers on reconnaissance Clint Eastwood’s robotic airplane in the film Firefox). At that duty, snipers, or fighter pilots operating in target-rich envipoint we would be led to ponder important questions about ronment could benefit. A 2009 National Research Council the nature and limits of the humanbeing in relation to the (NRC) report, Opportunities in Neuroscience for Future Army machine. Applications, lists in-helmet and in-vehicle TMS as long term Not all neurotechnology-related developments entail such projects to keep on the research and development radar. a high level of advanced science or engineering. According Of course, in the twenty-first century, national security to some, improved decision making and accelerated learning strategists face a multipolar world that also includes nonstate can be achieved with relatively simple neural stimulation actors capable of terror attacks that pose mainly a psychologidevices used in the right way. A number of studies have cal rather than an existential threat. Some technology disrupreported that a painless technology called transcranial tors are, in the language of a 2014 NRC report, “emerging and magnetic stimulation (TMS) can improve visual perception readily available.”2 To use one example, the cheaper cousin in healthy people.1 In TMS, a magnetic coil is placed above of TMS, called transcranial direct current stimulation (tDCS), the head, and electrically produced magnetic pulses pass might turn out to be just as beneficial in improving cognitive through the cortex. These pulses can alter the firing rate of abilities as TMS. All tDCS requires is a 9-volt battery and a certain neurons. Researchers hope that TMS may someday couple of electrodes.3 Enhanced cognition might be used to treat stroke patients or those with dementias pg. 9 or depression. Research also suggests thatcontinued TMS could on help healthy people benefit from better-than-normal visual perception. The military application is provocative: soldiers on reconnaissance duty, snipers, or fighter pilots operating in target-rich environment could benefit. A 2009 National Research Council (NRC) report, Opportunities in Neuroscience for Future Army Applications, lists in-helmet and in-vehicle TMS as longterm projects to keep on the research Garrison Printing Company and development radar. that the national Earth security Of course, recognizes in the twenty-first century, strategistsisface a multipolar world that also includes nonstate our most valuable resource. actors capable of terror attacks that pose mainly a psychological rather than an existential threat. Some technology disruptors are, in the language of a 2014 NRC report, “emerging and readily available.”2 To use one example, the cheaper cousin of TMS, called transcranial direct current stimulation (tDCS), might turn out to be just as beneficial in improving cognitive abilities as TMS. All tDCS requires is a 9-volt battery and a couple of electrodes.3 Enhanced cognition might TM
Trademark of American Soybean Association
The Society of the Holy Child Jesus is pleased to support
Ethics and Emerging Medical Technologies: A Symposium and thank
Rosemont College for addressing the ethical questions these new technologies raise.
www.rosemont.edu/ethics | 8
The Institute for Ethical Leadership and Social Responsibility
also be accomplished with new and better pharmaceuticals. A trailblazer in this regard is modafinil, the generic form of the antisleep stimulant marketed as Provigil that is already approved for use in the Air Force. In a different vein, terrorist organizations and conventional militaries would like to be stronger and faster.There is no reason in principle why prosthetic devices like exoskeletons and artificial limbs could not improve or even replace physical functions. Terrorist groups might not be as inhibited as conventional forces about recruiting fighters to undergo deliberate amputation for the sake of significantly improved performance. Especially in the context of terrorism, looming in the background are variations of the age-old problem of biosecurity. Since ancient times, and even in the biblical account of the plagues unleashed against pharaonic Egypt, microorganisms have represented a special kind of scourge. In the American war for independence, George Washington worried that the British were spreading smallpox in Boston, and during the Civil War, Confederate forces dropped horse carcasses in wells as they retreated from Union armies. Modern biology poses new opportunities to add to the list of select biological threat agents. Synthetic biology uses engineering principles to create new biological entities. Cells can be engineered to perform novel functions and provide new drugs, materials, and energy sources. Besides unintended consequences, they may also be designed to be harmful to humans, animals, and the environment. Increasingly, any bright high school biology student can master “synbio” techniques, and the cost of the raw materials like yeast and Escherichia coli (E. coli) is dropping rapidly.
9
|
Ethos
Besides synthetic biology—which generally builds DNA molecules out of smaller parts—powerful and efficient new laboratory technologies grouped under the heading of gene editing use an ancient biological system to modify strands of genes with great precision. Gene editing techniques like clustered regularly interspaced short palindromic repeats (CRISPR)/cas9 are already being used in agriculture and can modify genes in pests like mosquitos to render them infertile. Using these techniques, genes have been inactivated in human cell lines in the laboratory, but experiments on human beings are not permitted by any national regulatory system. What is especially remarkable and controversial about gene editing is the fact that the DNA in fertilized human eggs can be modified in germ cells so that novel traits can be inherited. Previously human germline modifications have largely been viewed as unethical, in somatic or body cells of an individual. These techniques bring germline changes closer to practical reality. There are plausible arguments for eliminating, say, breast cancer-related genes. The techniques also stimulate visions of armies made up of “designer soldiers.” However, apart from the fact that no one can predict the results of such experiments (genomes are of vast complexity and their manifestations depend on environmental triggers that cannot be factored in with confidence), the payoff for an aggressor would be nearly two decades in the future, and before that, concealment of the project would prove very difficult. Such science-fiction scenarios are compelling, but from a security-planning standpoint, they are ludicrous.
Rosemont College
Of more immediate interest is the need to bring certain neurotechnologies under extant international conventions as “dual use,” research that can be used for malign as well as benign purposes. TMC and tDCS are among the most likely neurotechnological candidates for consideration in the periodic revisions of the Biological and Toxin Weapons Convention (later in 2016) and the Chemical Weapons Convention (2017). As well, “calmatives” for crowd control—such as the opioid carfentanil—have been used by Russian special forces and have attracted the attention of the US military. Of interest to interrogation operations, neuroeconomists have studied the usefulness of the artificially introduced brain hormone oxytocin to enhance trust. The Briton Malcolm Dando and his colleagues have taken the lead on bringing these issues to the attention of the convention revision bodies, while my former post-doctoral fellow Nick Evans and I have initiated a project to catalogue these other neurotechnologies that are candidates for regulation. Finally, I offer a word about the changing politics and sociology of national security research. Discussions about national security and science usually focus on the physical sciences and engineering, but the life sciences, including biology and the social and behavioral sciences, have played a distinctive role in defense and intelligence research and development. Especially in the past 50 years, these sciences’ fortunes have ebbed and flowed depending on political events, cultural trends, and developments in the sciences themselves. In the late 1960s, much social and behavioral science undertaken on behalf of national security agencies was seen as politically objectionable and moved away
from university campuses to contract research organizations. Especially in the case of cultural studies of problems like communist insurgency, some argue that the result was an inherent conflict of interest, with paymasters getting the answers they wanted and research receiving inadequate peer review. But social and behavioral sciences are increasingly converging with basic physical science. Developments such as those described here in fields like genetics and neuroscience have brought much of this activity back to campus and appear to be the leading edge of a new era in the academic-industrial complex and the national security state. Notes 1. See, for example, Michael L. Waterston and Christopher C. Pack, “Improved Discrimination of Visual Stimuli Following Repetitive Transcranial Magnetic Stimulation,” PLoS One 5, no. 4 (28 April 2010): 1–10, doi: 10.1371/journal.pone.0010354. 2. Jean-Lou Chameau, W. F. Ballhaus Jr., Herbert Lin, and National Research Council, Emerging and Readily Available Technologies and National Security: A Framework for Addressing Ethical, Legal, and Societal Issues (Washington, DC: National Academies Press, 2014), ix, doi: 10.17226/18512. 3. Alexandre F. DaSilva, Magdalena Sarah Volz, Marom Bikson, and Felipe Fregni, “Electrode Positioning and Montage in Transcranial Direct Current Stimulation,” Journal of Visualized Experiments 51 (2011): e2744, doi: 10.3791/2744. This article was originally published in Strategic Studies Quarterly (Fall 2016: 9)
T H A N K S T O M A I N L I N E H E A LT H C L I N I C I A N S A N D S TA F F, THESE ARE YOUR P E R F E C T LY N O R M A L L I V E S .
LANKENAU MEDICAL CENTER
B R Y N M AW R H O S P I TA L
PA O L I H O S P I TA L
R I D D L E H O S P I TA L
B R Y N M AW R R E H A B H O S P I TA L
M I R M O N T T R E AT M E N T C E N T E R
HOMECARE & HOSPICE
LANKENAU INSTITUTE FOR MEDICAL RESEARCH
www.rosemont.edu/ethics | 10
Human Gene Editing: The Ultimate Genetic Spellchecking Program Eric B.Kmiec, PhD Rarely do we see a technological advancement in biomedical research garner such attention in the lay press as we have over the last several years with the emergence and evolution of human gene editing. For the vast majority of individuals, the words “human,” “gene” and “editing” do not naturally appear in the same sentence or phrase. Yet, new stories abound about the ease with which scientists are able to reengineer the human genome that may well lead to significant advancements in the development of therapies for inherited disease as well as the potential for genetic (re) programming of human traits. Even James Clapper, President Obama’s National Security Advisor, warned about the potential for gene editing becoming a weapon of mass destruction. It is rumored that NBC will produce a television series starring Jennifer Lopez surrounding the gene editing technology. Thus, it’s safe to say that human gene editing is now part of the national discourse for better or for worse. The capacity to change the underlying DNA sequence of the human cell has been the research goal of most geneticists for the past 50 years. It has, in fact, been possible to disrupt the continuity of the DNA strands and even repair point mutations in cell and animal models with some specificity for over 20 years. But never has it been possible to do so with such speed, technical ease and precision. And that, in a nutshell, is what has captured the scientific world’s attention and more so its imagination. In this one instance, we can point to the domestication of a naturally occurring process found in bacterial cells as the source of this transformative technological breakthrough. Bacteria activate a pathway known as adaptive immunity in order to fight off viral infection and reinfection by activating DNA elements, Clustered Regularly Interspersed Sequence Palindromic Repeats, mercifully abbreviated by the acronym CRISPR. These segments are transformed in the bacterial cell into another form of nucleic acid, RNA, and when combined with the protein Cas9, create the most powerful and useful genetic tool ever developed, CRISPR/Cas9. Studies on the details of how more primitive forms of gene editing actually work have been ongoing since the late 1970s when yeast genetics began to employ short pieces of synthetic DNA to alter yeast chromosomes. Other scientists evolved the technique, generically known as single agent gene editing, into other eukaryotic cells including human cells and plants. While these studies taught us a great deal
11
|
Ethos
about the regulatory circuitry embedded within various cell types and how they could enable genome reengineering, the frequency with which these events took place was so rare that in most cases some sort of enrichment or selection to actually find the genetically altered cells was required. Many biochemical tools aimed at improving the frequency were developed but often their activity centered on the manipulation of the target cell itself, making their implementation impractical in the clinical arena. But the emergence of a class of enzymes called programmable nucleases, including CRISPR/Cas9, changed all of this. To no one’s surprise, many of the foundational tenets established in studies of single agent gene editing are being directly applied to the new wave of gene editing approaches. Taken together, it is now possible to correct the single base error in the human beta globin gene that is responsible for the onset of Sickle Cell Disease. The process can be likened to a type of genetic spell checking where the improperly spelled word is corrected by removing the wrong letter, or DNA base, in the word, or the gene, and inserting the right one. By utilizing synthetic DNA molecules as the donor template, coupled to CRISPR/ Cas9, genetic spellchecking is taking place at unprecedented frequencies providing some hope for a genetic treatment for many inherited diseases. In other words, what was once thought to be impossible is now possible and what was thought to be harmless basic research now requires discussions about the ethics surrounding human genetic reengineering. As with all remarkable breakthroughs, there are some caveats. For example, scientists largely agree that genetic manipulation of somatic cells, such as skin cells, is both reasonable and safe as a target for gene editing. In fact, in Sickle Cell Disease, cells from the bone marrow are the likely targets for any gene editing treatment. But, engaged disagreements surround the use of gene editing technologies in germline cells such as sperm and egg. These questions are also more imperative now by recent discoveries made in our laboratory and others, regarding the precision with which CRISPR/ Cas9 acts on human DNA. We now recognize that CRISPR/ Cas9 activity can often leave a genetic footprint behind, a sort of scar tissue wherein the misspelled word or gene is accurately corrected but a small section of the adjacent DNA sequence becomes altered. This alteration often takes the form of a loss of one or several DNA bases that in almost all
Rosemont College
cases renders the gene nonfunctional. So, gene editing tools act to correct the genetic mutation but in doing so end up disabling the corrected gene itself. Our laboratory and others have been mapping and studying this process and we find that each copy of the gene, each allele, can have a different degree of genetic scar tissue further complicating the outcome of a gene editing event. For obvious reasons, an effective procedure for the avoidance or removal of the scar tissue must take place before widespread implementation of gene editing for inherited diseases takes place. Another more serious caveat is the one that plagues many breakthrough technologies and it centers on the three questions of “what is real,” “what is robust,” and “what is fiction?” Because of the enormous potential of gene editing, scientists and the lay press alike often get out in front of the capabilities of breakthrough technologies. Even in this reinvigorated field, there is an increasing number of inquiries and letters to journals challenging some of the advances that appear to be without merit or at times, fictional. The hunger and desire of the scientific community to see that this technology gets used to cure genetic diseases must be balanced with a tempered caution. Reporting false hope is far worse than reporting no hope. Ironically, CRISPR/Cas9 doesn’t need any hype, scientific or otherwise, as it is by far the most important genetic tool for translational medicine ever domesticated. Thus, it will fall to scientists to restrain their natural human desire to report nonrobust advances to patients and their families that have longed for truthful good news.
www.rosemont.edu/ethics | 123
The Institute for Ethical Leadership and Social Responsibility
On October 24, the Institute sponsored the Presidential Lecture, which was delivered by one-time Jesuit seminarian and former managing director at J.P. Morgan & Co., Chris Lowney. Mr. Lowney currently serves as chair of the board of Catholic Health Initiatives, one of the nation’s largest healthcare/hospital systems. The author of five books including the highly acclaimed Heroic Leadership, Mr. Lowney served as volunteer founding president of Jesuit Commons, an innovative collaboration which offers online university education in refugee camps in Africa and elsewhere. He conceived and co-founded Contemplative Leaders in Action, an emerging leader formation program now active in a half-dozen cities, and he is the founder of Pilgrimage for Our Children’s Future, which funds education and healthcare projects in the developing world. Mr. Lowney’s lecture was based in part on his book Pope Francis: Why He Leads the Way He Leads, which has been called by reviewers “an invaluable gift,” “one of the most compelling new books on the market today,” and “a book for the ages.” The book was written, he said, as a case study on Pope Francis’ leadership principles which, for the Pope, formed in his training as a Jesuit, but can be applied to everyone. The three images in the title – doing the laundry, dirty shoes, and the monastery bell – served to emphasize the everyday dimension of leadership. Rather than thinking of leadership as an innate, charismatic power limited to a select few, Mr. Lowney encouraged the audience to consider the way in which everyday leaders serve others. All too often, he reminded us, the same names come to mind when we think of great leaders: Abraham Lincoln, Martin Luther King, Jr., Mother Teresa, Nelson Mandela – individuals we put on a pedestal as if they are more than
13
|
Ethos
human. The reality is that while such exemplars are indeed considered so with good reason, there are leadership lessons to be gleaned from the maid, the construction worker, the monk, and many others. The crucial point is that authentic leadership involves sacrificing to serve a mission greater than one’s self, and this is something that can be put into practice daily. Ultimately, Mr. Lowney suggested that by taking a few moments at the end of each day to express gratitude, lift our horizon, i.e., see beyond the limits we have set ourselves, and reflect, we can begin to contribute to our own reorientation toward the service that lies at the heart of leadership.
Chris Lowney’s newest book, Everyone Leads: How to Revitalize the Catholic Church (Rowman and Littlefield) is now available. Editorial review: “Few people today are as well qualified to write on leadership in the Catholic church as Chris Lowney, who combines his deep understanding of Christian spirituality with real-life leadership experience. In his insightful new book, he offers data, stories, reflections, and best of all, practical plans to help Catholics breathe new life into the church they love” (James Martin, SJ, author of The Jesuit Guide to (Almost) Everything and Jesus: A Pilgrimage).
RHYTHMS. NOT ALGORITHMS.
ARTIST: DAVIS HOWLEY OF COMMONWEALTH CHOIR ©2014 WXPN
XPN.ORG
Mohamed Ali Niang, Malô co-founder
Entrepreneurs and the Future of Mali by Joseph S. Camardo, MD
On a recent visit to Bamako, the capital of Mali in
and, most important, the nutrients do not disappear when the rice is washed. So the brothers contracted with farmers who grow the rice, built a factory to process the product,
West Africa, I met Mohamed Ali Niang, a young man who
developed a plan to assure high quality standards for the
introduced himself as an entrepreneur. By definition,
product, developed a marketing plan and will be prepared to
an entrepreneur is “someone who exercises initiative by
launch Supermalô (Super Rice)--Africa’s first brand of forti-
organizing a venture to take advantage of an opportunity.”
fied rice—in the first quarter of 2017.
According to economist Joseph Schumpeter, entrepreneurs
Aside from the insight to develop the resources of Mali,
are not necessarily motivated by profit, even while regarding
the market and scientific research to develop the business
profit as a standard for achievement of success. One reason
plan and the organized execution of the plan, I saw that the
for this may be that profit is easy to measure.
enthusiasm, energy and optimism of the brothers are infec-
I also met Salif Niang, Mohamed’s brother. Together they
tious and engaging. That is a key for entrepreneurs. Having
organized a venture called called Malô to develop, manu-
met two other of the brothers, as well as the mother, father
facture and distribute fortified rice for the people of Mali.
and sister, I can say this energy and optimism seem to be
Their research and survey of the needs and opportunities in
family traits. And that bodes well for the future of Mali.
Mali indicated that, as people living in the city of Bamako
The seed capital for the project came from a US phil-
achieve stable jobs with reliable salaries, they would become
anthropic organization started by a man who believes in
more interested in the purchase of a higher-quality rice,
ethical leadership and social responsibility. Harry Halloran,
among other amenities that they might afford. Fortified rice
founder of Halloran Philanthropies, provided the initial
contains nutrients generally considered to be important for
funding for Rosemont College’s Institute for Ethical Leader-
maintenance of health, the incremental cost is negligible
ship and Social Responsibility. Mr. Halloran, along with
15 | Ethos
Rosemont College
other successful business people, believes that the principles
tribute to growth for many years. Who knows? Someday
of business can be applied in an ethical and socially respon-
Supermalô may be an international brand, available in other
sible manner to improve the world and the lives of the peo-
parts of Africa. Perhaps we may find it in Whole Foods,
ple everywhere – even while making a profit for investors.
Acme, Wegman’s, or even the Rosemont menu.
So by coincidence, or fate, Rosemont is connected to a new
Mohamed and Salif are impressive examples of what edu-
business in Mali. Mohamed and Salif may not know this yet,
cation and leadership can accomplish. We strive for both of
but their efforts provide us with an example of just the kind
these at Rosemont. This is also an example of the power of
of thinking and action our Institute wants to encourage.
philanthropy directed to sustainable activity. In Mali and
Although a business that is highly likely to be profitable in
elsewhere on the continent of Africa both donors and inves-
the future, Malô is set up to achieve more than financial suc-
tors can learn from the example of Harry Halloran and look
cess. The best modern nutrition is available in many parts
carefully at the business propositions from entrepreneurs.
of the world, but in some places high-quality affordable food
Companies that are started in Africa will make a profit over
may not be so easily obtained. As the brothers explained
the long term, investors will make a profit, the governments
to me, there is plenty of land, plenty of water and plenty of
will have a source for economic development and, over
hard-working farmers. So resources are present to provide
time, more government services will follow for the popula-
food for the population; indeed, Mali is a major producer of
tion. And in Bamako there may be a stock exchange to raise
rice, which is itself a major part of the diet. What was lack-
capital for new business. We should be optimistic about the
ing was vision and organization to focus the effort in a way
future of Africa. The future of Africa is in the hands of young
to improve the efficiency of production for a very important
women and men, like Salif and Mohamed, and will benefit
staple of the diet, and to set quality standards so that over
from the principles we believe are the basis for good business
time improvements in the diet would lead to improvements
in the 21st century.
in health. From start to finish there is benefit throughout the production chain: benefit to the farmers, benefit to the
More information about Malô can be found at www.malo.ml/#mission
land, benefit to the factory employees and, most importantly, a nutrition benefit to the people who buy the rice, which accompanies many of the meals in Bamako and throughout Mali and West Africa. Moreover, a business such as Malô will lead the way for others (entrepreneurs) who want to start a business in this part of the world. It is challenging, but opportunity and energy certainly exist, and the Niang family
Joseph S. Camardo, MD with Mohamed Ali Niang
provides an example of what can be accomplished. Social Responsibility is not charity; it is provision of sustainable production of goods and services for people so they can live to their potential. Alongside necessary contributions from governments to support NGOs that provide food, healthcare and other services in Bamako, Mali needs innovative, creative and energetic people such as Mohamed and Salif. Mali needs young people who have the initiative to shape the future of the country’s economy with a creative approach to new business. And these are young men who have a long future, so they will be able to con-
Joseph S. Comardo, MD, is a Trustee of the College of Physicians of Philadelphia and Senior Vice President of Global Health at Celgene Corp. He serves as the chair of the Institute for Ethical Leadership and Social Reponsibility’s external advisory board and chair of the board of Mali Health.
www.rosemont.edu/ethics | 16
The Institute for Ethical Leadership and Social Responsibility
Alan A. Preti
Leadership involves the ability to direct people toward the achievement of a common goal; an effective leader is one who succeeds in doing just that. But effectiveness is only part of good leadership. As the leadership scholar Joanne Ciulla has noted, “part of a leader’s job is to help others imagine morally better ways of living and doing things. … without moral imagination, leaders cannot create visions, understand their moral obligation to others, or implement their beliefs and values in the ways that they lead and in the initiatives that they take for change and transformation” (“Moral Imagination,” in Encyclopedia of Leadership, ed. G. Goethals et al., Sage Publications, 2004). Effective leadership, in other words, needs to be guided by a moral compass informed by ethical principles, skill in ethical reasoning, and a developed moral imagination.
The minor program in Ethics and Leadership Ethics is about right and wrong, good and bad. Philosophers in both the Western and Eastern intellectual traditions have long asked fundamental questions about the nature of ethics: What does it mean to say that an action is morally right or wrong? Is it something about acts themselves that make them right or wrong, or is it the consequences of actions that are important? How important is one’s motive or intention in doing the right thing? Is there an ultimate Good for human beings, and if so, how can we come to know it? And why be moral, anyway? Of course, there has been no shortage of attempts to answer such questions, and philosophers have developed a number of theories designed to provide standards regarding how we ought to act in the various dimensions of our lives. Among such theories are utilitarianism, which emphasizes the consequences of moral decisions; deontological theories, which emphasize duties and obligations; rights theories, which emphasize fundamental rights shared by all human beings; the common good approach, which focuses on the idea of a flourishing human community; and virtue theories, which emphasize the importance of those character traits necessary for a meaningful and flourishing life.
17
| Ethos
The minor in Ethics and Leadership in the undergraduate program at Rosemont College is an interdisciplinary program designed to provide students with a unique set of marketable skills and abilities for effective, values-based leadership. A core set of required courses introduces students to basic issues in the field of leadership studies and provides opportunities to put ideas and theory into practice. Elective courses from a variety of disciplines allow students to integrate the minor into their plan of study and connect it to their personal interests while exploring the connection between ethical leadership and social responsibility.
How will the program help me? Employer surveys regularly identify leadership skills and a commitment to ethical values as crucial to workplace success. The minor program helps meet employer expectations through the development of leadership skills such as critical and creative thinking, personal management, and organizational effectiveness, and through directed conversations about ethics, leadership, and social responsibility. Students participating in the program will thus increase their marketability to an employer pool that values such skills and experiences; students will also graduate with the knowledge and ability to connect their discipline to the community in which they are working.
For more information about the minor program in Ethics and Leadership: www.rosemont.edu/ethicsminor Program coordinator: Alan A. Preti, PhD Associate Professor of Philosophy, co-director, IELSR apreti@rosemont.edu | 610.527.0200 x2345
OUR WORK
OUR APPROACH
We champion business and community innovation by funding outstanding innovators and entrepreneurs who are advancing human wellbeing through job creation, financial inclusion, clean energy, education and the performing arts. Our global partners are spread throughout North America, South America, India and Africa in the following sectors:
We believe that business is a major catalytic force driving positive social change. In addition to funding, we support our partners by sharing our business expertise, experience and global connections. We support accelerators that enable social entrepreneurs to succeed. We support social innovators who are committed to poverty reduction. We are risk-affectionate when it comes to investing in people with innovative ideas and projects. We invest in young people who have chosen careers with social enterprises that fulfill their sense of purpose and meaning.
•
Entrepreneurship
•
Energy
•
Business Innovation
•
Community Innovation
•
Performing Arts
•
Religion
•
Education
•
Wellbeing
We see the world as holistic and prioritize the personal lives of family, team and partners. One of our greatest strengths is our ability to build relationships with people. We have a stake in each other’s personal happiness as well as the wellbeing of the community.
To I n s p i r e , I n n o v a t e a n d A c c e l e r a t e S o c i a l Inter ventions That Promote Human Wellbeing.
Back Cover
Major support for the Institute is provided by Halloran Philanthropies and individual donors.
1400 Montgomery Avenue Rosemont, PA 19010 610.527.0200 x 2345 Good Counsel Hall First Floor www.rosemont.edu/ethics Institute for Ethical Leadership and Social Responsibility Alan A. Preti, PhD and Col. Timothy Ringgold, US Army (ret.) Co-Directors