webs - The Hastings Center
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webs - The Hastings Center
HastingsCenterMatters A NEWSLET TER FOR FELLOWS , FRIENDS , AND ALUMNI OF THE HASTINGS CENTER i s sue 1 , fall 2 0 1 1 Tom Murray to Step Down as Hastings Center President That initiative was supported by a $2.1 million grant Tom Murray, PhD, will step from the Ford Foundation in 2007, and it launched a comprehensive fundraising campaign, the first phase of which will be completed by Murray’s departure. Hastings research has thrived under his guidance—on issues at the intersection of health policy, values, and justice; children and families; emerging biotechnologies and research ethics. Recent projects include an examination of controversies in the diagnosis and treatment of children with behavioral disturbances, funded by the National Institutes of Mental Health; an investigation of ethical issues in synthetic biology, funded by the Alfred P. Sloan Foundation; NIH-funded research on biobanking and genetic testing; a revision of The Hastings Center’s guidelines on end-of-life care, funded by the Donaghue Foundation and Sussman Charitable Trust; the Values Connection, a blog and publication targeted to the recent health reform debate; the Health Care Cost Monitor, the only blog devoted exclusively to health care costs; crosscultural work on aging and health care; and research on neuroimaging, funded by the DANA Foundation. down as president and CEO of The Hastings Center in 2012 after 13 years in that leadership role. He will continue to participate in Center research projects and remains a Hastings Center Fellow. “It has been a privilege to work with my colleagues, our Board, and our network of Fellows. We have helped shape some of the leading bioethical issues facing society, and I am exceedingly proud of our accomplishments,” Murray said. David L. Roscoe, chairman of The Hastings Center Board of Directors, said of Murray, “Tom has been a transformative president and a leader the field of bioethics. He has enhanced the Center’s position as a pre-eminent research institution, while expanding its capacity to reach a wider audience of journalists, policymakers, and the public.” Amy Gutmann, PhD, chair of the Presidential Commission for the Study of Bioethical Issues, president of the University of Pennsylvania, and a Hastings Center Fellow, also noted Murray’s influence. “Tom is a wise and knowledgeable expert in bioethics—and a wonderfully caring man—who has skillfully led Hastings into the 21st century.” Murray launched Bioethics and the Public Interest, an initiative that responded to increasing public attention to bioethics and a highly polarized political climate. The initiative created a robust public affairs and communications office and made Hastings a nexus for bioethics resources for journalists and policymakers alike. Keep us up to date about your work! The Hastings Center is a nexus for sharing new ideas, new knowledge, and new ways of thinking about the most important ethical issues in medicine and science. This newsletter will update you about The Hastings Center—but you can also use it to share your information with Hastings Center Fellows, alumni, colleagues, professional, and key organizations. Tell us about your projects, books and new initiatives—and we will use this newsletter to inform our expanding international network about your work. If you have information to share, please contact Michael Turton, communications associate, The Hastings Center, turtonm@thehastingscenter.org, 845-424-4040 ext 242, 21 Malcolm Gordon Road, Garrison, NY 10524. 1 F E L LOW S F E AT U R E Private Bodies, Public Texts: Composing the Narrative by Karla FC Holloway, PhD Writing Private Bodies, Public Texts was a battle between thick and thin—a battle Contents 1 Murray to Step Down 2 Fellows Feature: Karla Holloway 3 Cover to Cover: Books by Fellows 4 Fellows in the News 5 At the Center 6 Cover to Cover: Books by Staff over what makes a narrative, how coherent and finished it might be, why a “patient’s story” is slender and selective rather than a completed narrative, and how there are certainly deeply storied and unplumbed waters beneath. And then there was the matter of difference and access. How easily a traumatic moment becomes newsworthy—the loss of a child; the anguish after a storm; which bodies are worthy of rescue, deserving of grief, and which become display. Which bloated bodies might the camera pan over— and which do cameras turn away from out of ‘respect for the dead?’ There are intersections here. Threads stretch from one to the other, tying a narrative about a grievable death to the noisy cacophony outside of Ms. Schiavo’s nursing home. Fictions’ narratives restore complexity. The children in writer Kazuo Ishiguro’s haunting Never Let Me Go are woven into genetic medicine’s search for individualized medicine. I hoped that Private Bodies’ recall of the Ishiguro novel might give us pause over what constitutes a willing, informed patient population ready for a clinical trial. Even though we are trained to search for medical and legal solutions, it does not mean that tangled webs of storied threads should be invisible. The fictional professor Vivian Bearing ‘testifies’ to the shift of her body to text in the compelling play “Wit” by Margaret Edson. “They read me like a book” she says of her physicians. Indeed. Then a book it shall be. Private Bodies, Public Texts reads fictions in order to help us imagine the thick consequences of our choices regarding genetic medicine, death and dying, reproductive medicine, and clinical trials. When it was a book in search of a body, the ones who kept coming forward were minorities and women—all rendered vulnerable by their availability for public scrutiny. It’s a book that might explain that it is a perfectly reasonable question to ask why the currently popular story of Henrietta Lacks—not new at all to cell scientists who have known for decades whose cells these were—arguably reads like an exposé of her daughter’s vulnerabilities. My focus on perspective helps to explain why some bodies escaping Katrina were viewed as “looters” and others as persons in need of rescue, and how color mattered in that assignation. It asks us to think carefully about why Tuskegee is still the ur-text for clinical trials abuses in a way that masks legions of other narratives. Is the intersection of syphilis and black 2 Cover to Cover Recent Books by Hastings Center Fellows • New edition: How We Die: Reflections on Life’s Final Chapter, Sherwin B. Nuland, MD, Vintage Books, 2010. Contains a new final chapter entitled Coda:2010, which extensively reviews changes that have occurred in end-of-life care since the book was first published in 1994. • Genetic Justice: DNA Data Banks, Criminal Investigations, and Civil Liberties, Sheldon Krimsky, Columbia University Press, 2010. Takes a hard look at how the United States has balanced the use of DNA technology with the privacy rights of its citizenry. male bodies so familiar a text that it can appropriately stand in for others? Birmingham’s “public safety” director Bull Connor, who directed the use of police dogs and fire hoses against peaceful civil rights demonstrators during the 1960s, wrote then attorney general Robert Kennedy saying, “all our negroes have syphilis.” Do we miss a critical text regarding our presumptions about black male bodies when we dutifully narrate the heinous experiment? Why do legal documents call women in a persistent vegetative state by their first names and describe them as being in a “fetal” position and men retain the formal address of “Mr.” and are described as having “contractures?” Medicine’s stories are thick and complicated. Private Bodies, Public Texts is an intervention. It asks us to think of culture as a thick inscription for bioethics. It asks us to wonder at the consistency of certain gendered and racialized narratives and to acknowledge the inconsistency of others. I want students of medical humanities to know what we leave behind when we focus on the part of a patient’s story that will lead to diagnosis and treatment. I want students, professionals and potential patients to consider how some bodies are rendered up for public consumption and others are allowed their privacies. I want “vulnerability” to be understood as extrinsic, not intrinsic. I will teach Private Bodies this fall, alongside Ishiguro’s novel, Edson’s play, Octavia Butler’s science fantasy, and other fictions. I hope the class meetings encourage my pre-med undergraduates to discern the facts in fiction’s representations. Stay tuned! • Talking with Patients and Families about Medical Error, Robert Truog et al, Johns Hopkins Press, 2010. Addresses the challenges of communicating honestly and openly about mistakes in medical practice and offers guidance on dealing with patients’ reactions and questions. • Humanity’s End: Why We Should Reject Radical Enhancement, Nicholas Agar, MIT Press, 2010. Examines the proposals of four prominent proponents of radical enhancement and argues that the outcomes of radical enhancement could be darker than the rosy futures that these thinkers describe. • Private Bodies, Public Texts: Race, Ethics and a Cultural Bioethics, Karla Holloway, PhD, Duke University Press Books, 2011. Examines instances where medical issues and information that would usually be seen as intimate, private matters are forced into the public sphere. (See article on opposite page) • The Body Politic: America’s Battle over Science, Jonathan D. Moreno, Bellevue Literary Press, 2011. Examines our love-hate relationship with science from America’s origins to the present. • Life Before Birth: The Moral and Legal Status of Embryos and Fetuses, 2nd edition, Bonnie Steinbock, Oxford University Press, 2011. Provides a coherent framework for addressing bioethical issues in which the moral status of embryos and fetuses is relevant. Publishing a Book Soon? Send us the title, publisher, date, and an abstract and we will list your book in Hastings Center Matters. Contact: Michael Turton, turtonm@thehastingscenter.org, 845.424.4040 ext. 242. Fellows in The Forum Hastings Center Fellows are frequent contributors to Bioethics Forum (www.bioethicsforum.org),offering diverse commentary on issues in bioethics. Recent postings by Hastings Fellows include: “Plagiarism and Bioethics” by Franklin G. Miller, “How the FDA Got the Markingson Case Wrong” by Carl Elliott, “Dementia from the Inside” by Carol Levine, and “Legal Moralism and Restrictions on Abortion” by Bonnie Steinbock. To inquire about contributing an article to the Bioethics Forum, contact Susan Gilbert, at gilberts@thehastingscenter.org. 3 F ellows in the News features can improve patient care and in the long run reduce health care expenses. They are among the elements of the “Fable hospital,” an ideal health care facility as conceived and analyzed by leaders in health care and design. Elements of the Fable hospital are being adopted on the ground today, with the imperative to improve quality and value. A set of articles in the January-February 2011 Hastings Center Report examined the state of the evidence for these design features, looked inside two hospitals that put some of these innovations into practice, and considered how design fits into the moral mission of health care. “Fable Hospital 2.0: Beecher Award gathering, left to right: Hastings President Thomas Murray, Hastings Board The Business Case Chair David Roscoe, Beecher Award recipients James F. Childress and Tom L. Beauchamp, for Building Better and Hastings founder Daniel Callahan Health Care Facilities” provides a thorough n Fellows Honored with Beecher Award analysis of research that shows Tom L. Beauchamp and James F. Childress were presented that specific design innovations with the Hastings Center’s Henry Knowles Beecher Award at can yield enormous benefits, a ceremony in Washington, DC, in May. The award recognizes such as reducing health careindividuals who have made a lifetime contribution to ethics related infections in patients and and the life sciences and whose careers have been devoted occupational injuries to nurses, to excellence in scholarship, research, and ethical inquiry. as well as cutting energy use. Hastings Center President Thomas H. Murray recognized These benefits, in turn, reduce the recipients, both Hastings Center Fellows, for their concosts, leading to a return on investment tributions to the field of bioethics, both individually and as a within three years, write the authors, who are leaders in team. Beauchamp and Childress are authors of the classic health care management and design. The lead author is Blair bioethics text Principles of Biomedical Ethics, first published Sadler, JD, a Hastings Center Fellow and board member, a in 1979 and now in its 6th edition. senior Fellow at the Institute for Healthcare Improvement Tom L. Beauchamp, PhD, is Professor of Philosophy and and past president and CEO of Rady Children’s Hospital, San Senior Research Scholar at the Kennedy Institute of Ethics at Diego. Fable Hospital 2.0 is featured in the September 2011 Georgetown University. James F. Childress, PhD, is University issue of O, the Oprah Magazine. Professor and the John Allen Hollingsworth Professor of Ethics at the University of Virginia, where he directs the Institute n Joseph Fins Urges Caution for for Practical Ethics and Public Life. Psychosurgery in Health Affairs Article The Beecher Award is named for the late Henry Knowles Misuse of an FDA law allowing Beecher, MD. An anesthesiologist who, in the 1960’s, shed humanitarian exemptions may harm light on ethically questionable practices in human subjects vulnerable psychiatric patients, accordresearch, Beecher helped give birth to the field of bioethics ing to a February, 2011 article in Health and became one of its pioneers. Affairs by an interdisciplinary group of multinational investigators led by Weill Cornell Medical College ethicist Joseph J. Fins, MD, a Hastings Center Fellow and board member. The article calls on the Congress and federal reg- n Next-Generation Hospital Design Can Improve Health—and Save Money Extra large private hospital rooms with plenty of natural light and artwork may seem like unaffordable luxuries, but new research shows that these and other architectural and design 4 continues on page 8 4 At the Center New Grants Support Diverse Bioethics Projects The Hastings Center recently received grants to support the following projects: Health Care and the Undocumented after Health Care Reform: funded by the Overbrook Foundation this project focuses on undocumented residents who are excluded from insurance provisions of the 2010 health care reform legislation. Principal investigators: Nancy Berlinger and Michael Gusmano Animals in Biomedical Research: funded by the Klingenstein Foundation, an educational project to explore ethical, scientific, and legal issues on using animals in medical research and prospects for using alternatives to animal models. Principal investigators: Susan Gilbert, Tom Murray, and Greg Kaebnick Ethical Issues in Synthetic Biology: funded by the Sloan Foundation, this project will consider bioethical issues in four areas of synthetic biology—biofuels, environmental applications, engineering of the human microbiome, and work conducted in the “diybio” movement. Principal investigators: Tom Murray, Greg Kaebnick, Erik Parens, and Michael Gusmano Oncology Practice as a Medical Home: funded by the NIH and conducted in partnership with the Yale School of Nursing, this project will assess the structural capacity of an outpatient oncology practice to serve as a medical home for patients receiving cancer treatment and care for chronic symptoms. Principal investigators: Nancy Berlinger, Michael Gusmano, and the Yale School of Nursing Dan and Sidney Callahan Honored for Their Contributions to Culture In April, Dan Callahan, PhDcofounder of The Hastings Ricci Award presentation, left to right: Fr. Drew Christianson, Center and president emeritus, Sidney Callahan, Daniel Callahan and his wife Sidney de Shazo Callahan, PhD, a Hastings Center DisNOVA to Put Bioethics in the tinguished Scholar, received the Matteo Ricci, S.J., Award, which recognizes multi- Spotlight disciplinary learning with broad cultural A public television program co-proinfluence. The award was presented by duced by The Hastings Center, NOVA, the editors America, the national Jesuit and WGBH-Boston, and funded by an weekly magazine. NIH Challenge Grant, will examine the The award is named for Matteo Ricci ethical issues raised by personalized (1552-1610), the Italian Jesuit polymath medicine. The broadcast will use stories who bridged European and Chinese ranging from pre-implantation genetic culture. In creating the award, the editors diagnosis to cancer prevention and treatconsidered the standard Ricci set for ment to genetic testing for Alzheimer’s multidisciplinary learning with broad susceptibility to examine the science and cultural influence, also a hallmark of the ethics. Among the issues raised are Hastings Center research. The citation genetic determinism, parental responnoted, “[The Callahans] have gathered sibility to shape children, and decisions round them in conversation circles of about how to live and possibly end one’s scholars and friends who with them life. The program will air in spring 2012 cultivate the high form of friendship in and will reach an estimated 4 million which ideas and values are exchanged for viewers and 1.5 million website users a the sake of the common good…The pas- month. Hastings Center scholars and Felsions of their minds have inspired men lows will be featured. and women to undertake research, join conversations and build communities of ideas where the future of our society and of our world continue to be debated.” continues on next page 5 Cover to Cover Recent Books by Hastings Center Staff • The Ideal of Nature: Debates about Biotechnology and Nature, edited by Gregory E. Kaebnick, Johns Hopkins University Press, 2011.Is there inherent virtue in leaving a naturally occurring condition alone, or do we thrive by finding ways to improve it? Can “nature” and “the natural” guide moral deliberations in policy-making? • Health Care in World Cities, Michael Gusmano, Victor G. Rodwin and Daniel Weisz, Johns Hopkins University Press, 2010. Vastly different health systems in New York, Paris, and London are compared and lessons that can be applied to urban health care considered. • Trust and Integrity in Biomedical Research: The Case of Financial Conflicts of Interest, edited by Thomas H. Murray and Josephine Johnston, Johns Hopkins University Press, 2010. Nearly three-fifths of medical studies are funded by the industry itself. This volume assesses the ethical, quantitative, and qualitative questions posed by the financing of biomedical research. 2010 Cunniff-Dixon Hastings Center Physician Award winners, left to right: Ann Allegre, Anthony N. Galanos, Savithri Nageswaran, Stefan J. Friedrichsdorf, and Eric W. Widera Five Physicians Honored for Exemplary End-of-Life Care A pioneer in establishing palliative care as a medical specialty was one of the five American physicians honored with The Hastings Center Cunniff-Dixon Physician Award for improving the care of patients near the end of life. The awards were given by the Cunniff-Dixon Foundation, whose mission is to enrich the doctor-patient relationship near the end of life, in partnership with The Hastings Center which has done groundbreaking work on end-of-life decisionmaking. The nomination and selection process was administered by The Duke Institute on Care at the End of Life. Ann Allegre, MD, FACP, FAAHPM, director of medical programs at Kansas City Hospice and Palliative Care in Kansas City, Mo., received the senior physician award of $25,000. Dr. Allegre is a pioneer in hospice care and palliative medicine, coming to the field before formal training programs were available or professional literature existed. Anthony Nicholas Galanos, MA, MD, medical director of the Duke University Hospital Palliative Care Service in Durham, N.C., received the midcareer physician award of $25,000. A geriatrician, Dr. Galanos worked for more than a decade to establish a palliative care service at Duke. Early-career awards of $15,000 each were given to three physicians: 6 • Stefan J. Friedrichsdorf, MD, medical director of the Department of Pain Medicine, Palliative Care, and Integrative Medicine at Children’s Hospitals and Clinics of Minnesota, for innovative symptom management of children, compassion, and family-centered care • Savithri Nageswaran, MBBS, MPH, assistant professor of pediatrics at Wake Forest University Baptist Medical Center, for providing palliative care for children with life-threatening conditions • Eric W. Widera, MD, director of the Hospice and Palliative Care Service of San Francisco Veterans Affairs Medical Center and an assistant professor of geriatrics at the University of California, San Francisco, for his humility, his commitment to his patients and their families, and his leadership in creating forums of communication on geriatric palliative care issues The Cunniff-Dixon Foundation was founded in 2005 by Matthew A. Baxter in memory of his wife, Carley Cunniff, who died of breast cancer, and her attending physician, Dr. Peter S. Dixon, in Essex, Ct., who enabled her to die a peaceful death at home with her family and loved ones. Johnston discussing it can be found at http://childpsychiatry.thehastingscenter. org/ The workshops, held over three years, considered the controversies generally and also looked at them in the context of specific diagnoses—attention deficit hyperactivity disorder, depression, or bipolar disorder. Unnecessarily Polarized: Debate Over Diagnosing and Treating Emotional and Behavioral Disturbances in Children We need to tolerate reasonable disagreements about whether and how to diagnose children with emotional and behavioral disturbances, according to a special report that came out of a series of five workshops held by The Hastings Center and funded by the National Institute of Mental Health. The workshops were part of a project led by Erik Parens, PhD, and Josephine Johnston, LLB, MBHL, research scholars at The Hastings Center, that brought together an interdisciplinary group of psychiatrists, educators, parent advocates, social scientists, and bioethicists. Parens and Johnston wrote the report which includes 10 commentaries by workshop participants. One of the report’s disturbing conclusions is that many children with patently problematic moods and behaviors fail to receive the care recommended by experts. Systemic and cultural pressures compromise the diagnostic process and constrain the treatment choices of clinicians and parents, making it increasingly likely that medication is the only treatment children receive, even if the combination of medication and psychosocial treatment is recommended by experts. The report and a video of Parens and Erik Parens Speaks About Behavioral Genetics at Meeting of Presidential Bioethics Commission Hastings Center Senior Research Scholar Erik Parens, PhD, spoke about behavioral genetics at a meeting of the Presidential Commission for the Study of Bioethical Issues earlier this year. The meeting kicked off the commission’s examination of the ethical and policy issues raised by genetics and neuroscience. Parens was invited to discuss what he considers the most pressing ethical and social issues that behavioral genetics research raises. Parens’ research examines how we use new technologies to shape ourselves and how emerging science shapes our self-understanding. He has written extensively on the topic, including co-editing Wrestling with Behavioral Genetics: Science, Ethics, and Public Conversation (Johns Hopkins University Press, 2006). He was co-principal investigator on a project funded by the National Institute of Mental Health, which explores the controversies surrounding the diagnosis and treatment of emotional and behavioral disturbances in children, and another, funded by the Dana Founda- tion, investigating the uses and misuses neuroimaging technologies. The commission also began a review of human subjects’ protection. This follows the revelation last fall that the U.S. Public Health Service supported research in Guatemala from 1946 to 1948 that involved intentionally infecting vulnerable populations with syphilis. Susan Reverby, the historian who discovered and disclosed the studies, wrote about her research in Bioethics Forum, the Hastings Center blog. She also spoke before the commission. Amy Gutmann, commission chair and President of the University of Pennsylvania, is also a Hastings Center Fellow. Annual Report Wins Award The Hastings Center was named winner of a 2011 American Inhouse Design Award for its 2009 Annual Report. Designed by Hastings Center art director, Nora Porter, the report was written by the Center’s public affairs editor, Susan Gilbert. The annual report category is highly competitive. Past winners include Aetna, the American Bar Association, the American Heart Association, HBO, Geico, Lockheed Martin, Mattel, Pepsi, Time Inc., and United Airlines, among others. The 2011 awards were sponsored by Graphic Design USA, The Creative Group, and Finch Paper. continues on next page 7 At the Center Fellows in the News continued from previous page continued from page 4 Human Enhancement: The View from Switzerland ulators to tighten a law that permits the use of brain devices to treat rare neuropsychiatric disorders without sufficient clinical trials and patient oversight. A New York Times report on the article noted that while hundreds of people have had psychosurgery to treat obsessive compulsive disorder, “some of the field’s most prominent scientists are saying, ‘Not so fast.’” “We believe there needs to be more careful regulation of the use of the Humanitarian Device Exemption in psychiatric patients,” says Dr. Fins. “We want to ensure that only orphan diseases are included in this exemption and that safety information is collected from every patient treated with these devices.” Recent Hastings Center work in neuropsychiatry includes research on the diagnosis and treatment of psychiatric disorders in children, funded by the National Institute for Mental Health, and on the uses and misuses of neuroimaging, funded by the DANA Foundation. In May, Dr. Fins was named the first recipient of a new professorship—the E. William Davis Jr., M.D. Professor of Medical Ethics at Weill Cornell Medical College in New York. The Brocher-Hastings Center Summer Academy, a five-day intensive seminar that brought together distinguished scholars and graduate students to consider the medical, ethical, and legal implications of human enhancement, was held in Geneva during the first week of July. Many countries and disciplines were represented as participants looked at enhancement from a broad range of perspectives—from disability rights and military human enhancement to cognitive and moral enhancement and the politics of human genetic enhancement. Erik Parens, senior research scholar at The Hastings Center, gave the opening presentation on the need for a productive conversation about technologically enhancing humans and Hastings Center president Tom Murray addressed enhancement in sport. Two Hastings Center Fellows also presented. Eric Jeungst, PhD, spoke on the distinction between enhancement and treatment and David Wasserman, JD, addressed neurobiology and the possibility of moral enhancement. “It was an invigorating and exhausting intellectual feast shared by 50 people who care passionately about ethics and the future of humankind” Murray said. HASTINGS CENTER MATTERS n Bruce Jennings Named Editor of Encyclopedia of Bioethics Hastings Center Fellow Bruce Jennings, MA, has been named editor-in-chief of the fourth edition of The Encyclopedia of Bioethics slated to be published by MacMillan in 2013. Gregory Kaebnick, PhD, Hastings Center research scholar and the editor of the Hastings Center Report has been named to the encyclopedia’s editorial board. When the first four volume edition was published in 1978, the field of bioethics was still in its formative years. It was immediately acknowledged as a landmark reference that helped define the field. It received the Dartmouth Medal for outstanding reference in 1979 and has maintained its high level of acclaim ever since. SUMMER 2011 Director of Public Affairs and Communications: Mary Crowley Managing Editor: Michael Turton Designer: Nora Porter Contact: turtonm@thehastingscenter.org; 845-424-4040, x242 Hastings Center Matters is a biannual publication of The Hastings Center, a nonpartisan research institution dedicated to bioethics and the public interest since 1969. The view looking north from The Hastings Center, Garrison, New York. 8
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