that vilified alternative medicine as quackery for most of the century would (Thomas Jefferson University Hospital) and “The Center for Alternative Medicine …
C E N T E R F O R B I O E T H I C S U N I V E R S I T Y O F P E N N S Y LVA N I A
Published quarterly by the Center for Bioethics at the University of Pennsylvania
Volume 3, No 1, Fall 1997
FromtheDirector The Business of Bioethics Ought to Be A Bit More-Business
Arthur Caplan, PhD I finish my talk on ethics and the challenge of cost containment in the auditorium of the small liberal arts college A number of people come forward to ask me questions while the rest of the audience files out I quickly scan the ten or so people who want to chat further and notice there is an older man, probably in his early sixties, hanging back in the small circle of people who have hung around I work my way through the questions and people begin to trickle away The man does not ask anything, he just listens to the exchanges between me and the others After everyone else has gone I turn to him and ask what is on his mind He glances down at the floor then up at me and says you know, having listened to
your talk and these questions I am a bit embarrassed to tell you that I work for the managed care industry But, I do And when you talk about the ethics of managed care and cost containment you and a lot of people in this audience do not give us a fair shake Does bioethics give managed care a fair shake? For that matter, does bioethics give the business of health care a fair shake? One way to respond to these questions, a way that I find tempting in these sorts of situations, is with indignation Politeness often mandates a silent form of indignation, but indignation it is As the executive from managed care began to plead his case I thought to myself: Of course, bioethics does not give business a fair shake Those in the business of health can look after themselves quite nicely They hardly need the commiseration of ethicists
continued on page 5
Alternative Medicine and Corporate Medicine
Paul Root Wolpe, PhD Medical services today seem paradoxically to be going in two opposing directions
On one hand, we are dazzled by new sophisticated biotechnologies: viral genetic delivery vectors, synthesized pharmaceuticals, new internal imaging techniques On the other hand, interest in low-tech alternative therapies is exploding, and managed care companies, elite medical centers, and practitioners are scrambling to meet demand While ethicists have been paying a lot of attention to the issues of high-tech medicine, few have noted or addressed the social and ethical paradoxes inherent in the turn to low-tech alternatives Who would have predicted that the very medical centers and hospitals that vilified alternative medicine as quackery for most of the century would suddenly be opening clinics, hiring practitioners, and advertising alternative, traditional, and spiritually-based therapies to their patients? Over thirty-five medical schools now include courses in alternative or complementary or integrative medicine in their curriculum NIH is funding research through its new Office of
Alternative Medicine Community hospitals and academic medical centers are opening new services such as the Division of Complementary Medicine University of Maryland, The Center for Integrative Medicine Thomas Jefferson University Hospital and The Center for Alternative Medicine and Longevity Columbias Miami Heart Institute Advocates of alternative medicine have long argued that many modalities are effective, have few side effects, can be scientifically validated, and involve a closer practitioner-patient relationship Yet the change of heart in establishment medicine has not been due to new scientific findings, a new appreciation of traditional healers, or a spiritual awakening on the part of hospital administrators The watershed moment was unquestionably the publication, in January of 1993, of a landmark article in The New England Journal of Medicine by Harvards David Eisenberg and five colleagues Eisenberg et al found that over a third of the 1,539 adults they surveyed had used
alternative therapies in the past year, averaging 19 visits per person The article calculated that the nation spends about 10 billion per year out-of-pocket for alternative medical care, only three billion less than out-of pocket-expenses for all hospitalizations in the United States Ten billion dollars was the kind of persuasion that medical centers understood For years, institutionally-based physicians had practiced or referred patients to alternative modalities in secret, fearing ridicule or even ostracism from colleagues Now, suddenly, hospitals started polling their staff to see what modalities they were qualified to offer Administrators and physician executives began calling meetings to discuss how to best provide alternative medical services to their patients And clinics, departments, and consultation services in alternative medicine began to appear What are we to make of this latest trend? Clearly there is benefit in opening up the medical armamentarium to low-tech, effective
therapies Certainly there is relief that the hubris that dismissed traditional therapies out of hand seems to have diminished In a time of monetary cutback for care, what could be more attractive than therapies that are preventive in philosophical outlook, can often be practiced by allied medical personnel in outpatient settings, and that have the added benefit of being high in patient satisfaction?
continued on page 4
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Lock Out Back Door Eugenics
David Magnus, PhD Among the greatest sources of anxiety with respect to the new genetics is the worry that we are witnessing the birth of a new eugenics movement The eugenics movement often masked race and class prejudice in a pseudo-scientific guise and became an excuse to engage in many different kinds of discriminatory practices Should eugenics be a major concern for us as we head into the 21st century? In India and parts of China, the killing of unwanted female infants has been augmented by the abortion of unwanted female fetuses
thanks to the development of amniocentesis The result is unbalanced sex ratios significantly more males than females This is an illustration of what is often called back-door eugenics Unlike some of the earlier eugenics programs which ultimately involved the state through sterilization laws, immigration restrictions, tax incentives, etc the new eugenics is a result of the collective effect of individual choices Will back-door eugenics take place in this country? Are there potential dangers which will result? As Philip Kitcher has argued, back-door eugenics is to some extent inevitable and unproblematic One of the benefits of genetic testing is the potential for parents to make more informed decisions Those who are at risk for some of the most serious genetic disorders previously had a choice between having no children or risking the creation of a horribly diseased child Genetic testing allows parents to abort fetuses and reduce the incidence of many of the worst diseases imaginable
While providing parents with the power to avoid bearing children with these terrible diseases seems a blessing, there are difficult questions which arise At what point do we draw the line between those in India who abort unwanted female fetuses, and parents who perhaps aided by a genetic counselor choose to abort a fetus destined to die an early painful death? Some patients with Huntingtons feel that the several healthy decades of life that they have is what really matters Other genetic traits many cause lesser health problems and risks Will testing eventually stigmatize all those who are unhealthy or abnormal in any way? Will parents choose to test for other socially important traits, such as being thin, or tall? Will they test for homosexuality along with a propensity to develop heart disease? In response to these worries, two very different attitudes have developed While accepting that some degree of eugenics is inevitable, one group argues that ultimately, we must leave
reproductive decision-making in the hands of parents If the ability to test for a trait is available and affordable, the medical community must allow parents access to the test And once a woman has the information, it is ultimately her decision whether to abort or continue with a pregnancy On this view, any other option would violate the fundamental rights of any patient Principles of autonomy which underlie much of medical ethics strongly support this position So, too, does a mistrust of the state — allowing governmental interference in issues as personal and private as reproductive decision-making is seen as the first step towards the old eugenics This view is opposed by those who are unwilling to allow the market place to operate unchecked They worry that obsessive concern for individual rights and patient autonomy and a mistrust of the government may leave us without adequate state regulation The potential negative consequences of an unregulated market are seen by many as a far
more likely source of danger This group claims that concern for individual rights may lead us to pay insufficient attention to communal and social welfare In this debate, broader philosophical and political issues may be at stake as much as scientific issues The trade-off between individual rights and the social good, and the relative roles of the market and government regulation are as central to these debates as the difference between dominant and recessive characters Whatever solutions are advocated for each of the problems discussed so far, there is one point of universal agreement An educated public is a necessary prerequisite for addressing the serious ethical and social decisions we are facing Those who argue that we ought to trust parents with reproductive decision-making rely on
continued on page 4
Publications Services/XXXXX/1097/6M/RCMM
FA C U LT Y S TA F F
DI RECTO R S TAFF
Arthur Caplan, PhD
FACU LT Y
Janet Abrahm, MD Robert Aronowitz, MD David Asch, MD, MBA Charles
Bosk, PhD Mildred Cho, PhD Bernard Kaplan, MD Jason Karlawish, MD Sara Kinsman, MD Paul Lanken, MD Donald Light, PhD David Magnus, PhD Mimi Mahon, MSN, PhD Glenn McGee, PhD Jon Merz, JD, PhD, MBA Sally Nunn, RN Pamela Sankar, PhD Lois Snyder, JD Peter Ubel, MD Paul Root Wolpe, PhD
VI SI T I NG FACU LT Y
Janice Clinkscales Nicole DeNigro Jeff Goodman Garth Green Megan Hallam Porsha Simmons Ellen Wise
RES E ARCH S TAFF
Monica Arruda Jacqueline Hart Jennifer Klocinski David Weeks
W EB S TAFF
Jamie Blank Jocelyn Garavoy Myrna Kuo Larry Miller Yehuda Potok Brett Wilson Alexia Wolf
H OW TO REAC H U S
Robert Baker, PhD
F ELLOW S
James McCartney, PhD
ADM I NI ST RAT I VE DI RECTO R
phone: 215-898-7136 fax: 215-573-3036 http://wwwmedupennedu/ bioethics
Antoniéta Rouse
Correspondence and Items of Interest should be addressed to: Glenn McGee, Editor, Center for Bioethics Newsletter, 3401 Market Street, Suite 320, Philadelphia, PA 19104-3308
The Center for Bioethics Newsletter is produced
by the Center for Bioethics of the University of Pennsylvania for the dissemination of information and as a reference for its constituents The Editorial Staff has sole authority over and responsibility for the content of the Newsletter All inquiries or complaints concerning content should be directed to the Editors at the address above We welcome comments, letters, contributions, and general input The Center for Bioethics Newsletter is published quarterly free of charge and is distributed nationally to the Centers subscription and mailing lists If you are interested in being added to the subscription list, please contact Porsha Simmons at simmonsp@mailmedupennedu or fax 215573-3036 No part of the Newsletter may be reproduced in any form, in whole or in part, without the express written consent of the Managing Editor and Editor Editor: Glenn McGee, PhD / Managing Editor: Ellen G Wise
2
FromtheEditor Subject to Payment? Cash and Informed Consent
Glenn McGee, PhD
Fifty years after the
worlds conversation at Nuremberg about medical research abuses, Jean, a 20-year-old college senior, sits in the office of the clinical director of her universitys egg donation program He tells her about hyperovulation drugs and a short, outpatient procedure with a few risks She daydreams about how strange it is to be talking with this man, and about how to handle the 12,000 on her Visa bill Her mom and dad would faint if they knew about it He is nice, she thinks He looks professional and sounds honest He asks more questions about her dreams and plans than have any of her professors As Jean sips a cappuccino and reads through the consent form, she decides to take the money offered, and enroll as an egg donor in a small infertility protocol Shell still have 8,000 worth of credit card debt, but she thinks a year of part-time work and conscientious time management can mipe that out Thirty years after Henry Beechers article exposing abuses in US clinical research, the youngest of the
psychiatry team are meeting to discuss recruiting issues These 35-year-old clinicians are also assistant professors who will soon stand or fall on their ability to produce discoveries in psychoactive drugs They are talking about a controlled study of a new antidepressant A week later the back page of the local newspaper carries a 6-inch advertisement for their study: Depressed? Research treatment is available at no cost Qualified persons will receive 3 months of research therapy with a psychiatrist and may also receive an experimental drug designed to treat depression At the close of the study, you will receive free referral to an outside clinic if you so desire Meanwhile Carl is halfheartedly watching Donahue as he thumbs through the paper and sees the ad He is miserable and has been for the 2 years since the death of his wife But he has no money and his managed care plan does not provide for outpatient psychiatric treatment He makes the call Many of us who work in health care have
paused to remember the atrocities detailed at Nuremberg and to celebrate its affirmation of human rights But one part of Nuremberg seems more distant with every passing year Ironically, it is articulated in the primary principle of the Nuremberg Code, informed consent: the person involved should be situated to exercise free power of choice, without the intervention of any ulterior form of constraint or coercion With todays emphasis on the rights of individuals rather than the social context of choices, we have tended to see the prohibition of coercion as a simple reminder not to strong-arm potential participants But the point of the Nuremberg Code, enunciated again in the Belmont Commission report, was much more fundamental: Researchers should take great care to make sure that prospective participants enroll in experiments on the basis of their evaluation of the study, not because of large cash enticements or other rewards they are ill-suited to refuse An article in the Wall Street
Journal detailed the extensive recruiting of homeless and indigent persons into clinical research by a large US pharmaceutical firm Homeless, alcoholic enrollees described their attempts to conceal both their own medical histories and the deleterious effects of studied drugs in order to secure gainful employment as a research subject At issue is the meaning of freely given informed consent How free is our 20year-old? How free the depressed widower? The conventional wisdom in research holds that paying participants with cash or free treatments is no problem at all as long as participants understand the risks and benefits of enrolling in a particular study Concerns about payment to participants can seem patronizing or an affront to the rights of the individual Why shouldnt a person be paid handsomely for participating in a risky trial? But the conventional wisdom is wrong Every choice about participation in research is situated in a context and some contexts limit the freedom of
participants If children and mentally incompetent persons cannot be correctly informed, neither can those who are poor be correctly informed in the presence of
continued on page 5
NewFaculty
Mimi Mahon Mimi Mahon is a pediatric nurse practitioner who has practiced in the areas of pediatric neurosurgery/neurology, intensive care, and trauma She received her BSN from Loyola University Chicago, and her MSN, PhD, and nurse practitioner certification from the University of Pennsylvania Dr Mahons program of research includes factors that affect childhood bereavement She has studied factors that affect childrens understanding of death, including violent death, sibling death, and cultural influences Mimi will serve as Center Faculty and liason to the prestigious Penn School of Nursing is an Associate Professor of Medicine in the Hematology/Oncology Division She attended medical school at the University of California at San Francisco, did residency training at the Massachusetts General
Hospital, and returned in 1977 to Penn to complete her fellowship training She joined the faculty in 1980 Her clinical work has been done at the Philadelphia VAMC, where she served first as Section Chief of Hematology/Oncology 1984-1994 and then Chief of the Medical Service 1994- 1997 Her area of interest is pain management and palliative care, especially in patients with cancer Dr Abrahm, a member of the University of Pennsylvania Cancer Center faculty, has recently been selected as a Soros Faculty Scholar, sponsored by the Project on Death in America Her project will be to improve palliative care as well as the care of the dying and the bereaved throughout the University of Pennsylvania Health System Dr Abrahm will also serve as center faculty
Dr Janet Abrahm
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Alternative Medicine continued from page 1
The competition to offer alternative modalities in hospitals is not without its dangers, however Alternative practitioners are often undertrained, unlicensed, and may be unskilled
in recognizing illness signs that call for a referral to other kinds of care Alternative modalities are so hot right now that they are being accepted uncritically Hundreds of therapies can be grouped under the unfortunate name alternative, yet they can be as different from each other as they are from orthodox medicine What is the common ground among chelation therapy, a sophisticated chemical infusion technique that was first developed after World War II for heavy metal toxicity and is now touted as a circulatory enhancer; acupuncture, a 5,000 year old Chinese healing modality based on energy meridians; and chiropractic, a spinal manipulation technique invented in the 1880s by a magnetic healer in Iowa? Only that orthodox American medicine has, until recently, rejected all three Community-based hospitals seem to be competing to offer consumers as many alternative modalities as possible While most university-based centers will only hire alternative practitioners who can be certified or
licensed, the brochure for the Center for Alternative Medicine and Longevity at Miami Heart Institute lists at least 26 modalities, from applied kinesiology to bio-oxidative therapies to QiGong to iridology The indiscriminate rush to offer anything alternative seems driven by the assumption that the bigger the menu, the larger the potential market share While many alternative therapies — though not all — can cause little active harm, American medicine has traditionally had a role in quality control, a promise to offer only those therapies that are both effective and safe Many alternative therapies clearly fit the bill Indiscriminate laundry lists of modalities do not The great irony of the assimilation of alternative services into medical institutions is that the rise of alternative medicine over the last few decades was due as much to its cultural symbolism as to its healing potential In a time of stuffy, closeminded medical thinking, going alternative was symbolic of the rejection
of establishment medicine, a countercultural display akin to bra-burning or pink trianglewearing Acupuncture loses its countercultural symbolism when it is taught at Harvard medical school Alternative medicine is becoming corporate, becoming just another valueadded service to market to consumers Alternative practitioners will soon become just another set of allied medical personnel under the direction of a primary care doctor, and will lose much of what made their care so desirable in the first place As it has so many times before, establishment medicine is inviting a rejected group to nestle under its protective wings Alternative practitioners who rush medical centers may do well to study the fate of homeopaths, midwives, bone setters, osteopaths, and others who fell prey to the promises of establishment medicine, only to disappear within its clutches
Lock Out
continued from page 2
those parents being well-informed: the market is more likely to lead to bad consequences if those
making decisions do not have enough information to weigh risks and benefits Similarly, those who urge more regulation of the new genetics require a well-educated and informed public to insure sufficient vigilance and critical scrutiny, lest we slide into the problems of the eugenics of the past Whatever views one holds about the particular solutions to some of the other problems caused by genetic technology insurance discrimination, reductionism, allocation of resources they will all require a well-informed public This is necessary to properly understand the way genes and environment interact; the probable limits and potential benefits of genetic technology; and to develop an adequate health care policy
we must leave reproductive decisionmaking in the hands of the parents
This analysis has three implications First, we need to do a better job of integrating bioethics into science education at every level from primary through medical school Second, bioethicists must continue to be
publicly visible and to utilize mass media to communicate with the public Journalists and bioethicists should work together to produce a more informed citizenry Third, given the level of knowledge the public actually possesses, we need to create institutions which can help avoid the troubling consequences of leaving our ethical decision-making in the hands of the market Intermediate institutions such as professional organizations offer potential precisely because they are made up of individuals more likely to be well informed, yet without the dangers state intervention represents However, for these institutions to act in a regulatory capacity, it is important that they be willing to act: the AMA for example must be more willing to censure its members for unethical behavior The new genetics will require that bioethicists play a prominent role in each of these activities
Center Faculty Receive Major Grants
Pamela Sankar and Jon Merz were awarded a grant by the Charles E Culpeper
Foundation for a 2 year observational and survey study of patient privacy and the confidentiality of the medical record Mildred Cho, Pamela Sankar, Paul Wolpe, Lynn Godmilow of the Department of Genetics, and Jesse Berlin of the Department of Biostatistics and Epidemiology have been awarded a grant from the Ethical, Legal, and Social Implications program of the National Human Genome Research Institute for a three year study to examine factors associated with use of BRCA1/2 genetic testing for hereditary breast and ovarian cancer The study will examine the role of both patients and their health care providers in decisionmaking about genetic testing and medical treatments or preventive measures for cancer Jon Merz, Pamela Sankar, Emma Meagher of the Department of Medicine, and Tim Rebbeck of the Center for Clinical Epidemiology and Biostatistics have been awarded a grant from the Ethical, Legal, and Social Implications program of the National Human Genome Research Institute for a three
year study to develop and improve methods of securing informed consent for the banking of DNA for research
4
From the Director
continued from page 1
And anyway ethicists who worry about the business aspects of health care are at best misguided and at worst apologists for power This is a moderately interesting, rhetorical soliloquy I must say even as I reflect back on it now But is it at all valid? Isnt it true that one of the main responsibilities of those who do bioethics is to challenge the stances of the powerful and the well-off in order to make sure that the interests of the vulnerable and the disadvantaged are protected? Bioethicists need to be fair but the way to be fair to the captains, colonels and generals of the trillion dollar health care industry is to tweak their consciences rather than curry their favor It is of course precisely sentiments like these that lead some to diagnose bioethics as suffering from a bad case of 1960s counter-culturism Bioethics relationship
with the world of business grows even icier when so much of what is wrong about American health care looks like it is a function of aggressive business practices being imported into health care When
the American Medical Association signs an endorsement contract with the Sunbeam Corporation or a giant health care chain like Columbia-HCA attains unprecedented profits following predatory acquisition and billing
removed from the businesses that created them may make this fact hard to see but it is nonetheless a fact Bioethical skepticism is further fueled by the fact that the health care industry is both distrustful and secretive when it comes to letting bioethicists learn something about business If you pull your favorite bioethics anthology off the shelf you will quickly see that business is not excoriated in the writings of bioethicists–it is just ignored There are never any case studies of business decisions–good or bad Well, I am as willing as any maybe more willing than most to
whine about the sins of money and power in medicine But I think the man from managed care is right Bioethics does not give business a fair shake Not because it is wrong to be critical or challenging but because it is wrong to be ignorant of the forces, traditions, people and instutitions that so fundamentally shape American health care and naive to think that bioethics is not shaped and supported by that business
Bioethics does not give business a fair shake
practices, bioethicists are quick to arrive on the scene of the moral crime, fingers cocked and ready to point, tongues poised to fulminate near any open microphone The problem with my reaction to my critic and with an unremittingly hostile stance toward the business of health care is that it is simply too naive Business has always been a part of health care Centers housed in academic medical centers or receiving funds from foundations two or three generations
From the Editor
continued from page 3
an offer they literally cannot
refuse The key to informed consent is proportional reward, the acceptable relationship, to be determined by investigators and institutional review boards, of reward-torisk and reward-to-participant context Investigators do have a responsibility to offer treatment for any anticipated adverse effects and bad outcomes to participants But risks should not be involved in calculating compensation Large cash awards, whose real motive is to recruit participants that otherwise might be unwilling to enroll, cannot be justified as front-loading to offset qualitatively significant but statistically rare risks, such as the risk of future infertility for the 20year-old egg donor The participant must feel that risk has been compensated only by conscientious study design, consistent monitoring of participants and treatment of adverse effects or unanticipated exigencies resulting from enrollment A proportional reward will thus consider only the amount of time and effort required Where participants are
being offered large rewards, extra care should be taken by the institutional review board to ascertain that the risk itself is not being compensated
While it is certainly appropriate to include office evaluations by a psychiatrist in the process of studying a potential psychoactive drug, it is irresponsible to package those visits as therapy unless the researchers are willing to take on the responsibilities of clinicians with their subjects, including the obligation not to simply abandon the patient after the study Researcher administration of intake interviews or questionnaires designed to test efficacy, the bulk of what is being offered to our depression participant, carry an allure that is reminiscent of the spinal taps offered as treatment to black men in Macon County, Alabama during the Tuskegee study If researchers offer therapy to participants, it needs to be therapy per se And even then, because the depressed person is in no position to refuse free therapy as an inducement to
enroll, the value of that therapy should not exceed in value the calculations proposed below A benchmark for proportional reward calculations is the mean hourly salary of those in the demographic pool of potential participants multiplied by the anticipated actual research contribution time If the pool of potential participants
is citizens of Dallas, those citizens average hourly wage may be calculated and a figure derived from the time required for the study multiplied by that wage This formula should be included in the consent form and explained at time of enrollment We must not forget the legacy of the Nuremberg Code: informed consent means consent without coercion Proportional reward recruiting policies can help ensure that freedom Adapted with permission from A Piece of My Mind, in Journal of the American Medical Association, July 16,1997, Vol 278, No 3
Roe vs Wade After 25 Years
The University of Pennsylvania Center for Bioethics and the Boston University School of Public
Health, Health Law Department are sponsoring a conference, The 25th Anniversary of Roe v Wade, on January 23-24, 1998 on the campus of Boston University, Boston, Massachusetts For further information please contact George Annas at annasgj@buedu or fax 617-638-5299
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Talks Publications
David Asch recently published the following articles: Euthanasia among US critical care nurses: practices, attitudes, and social and professional correlates with Dekay in Medical Care, 35:890-900; What predicts gastroenterologists and surgeons diagnosis and management of common bile duct stones? with Shea, Johnson, Staroscik, et al in Gastrointestinal Endoscopy, 46:40-7; Are supplementary services provided during methadone maintenance really cost-effective? with Kraft, Rothbard, Hadley, McLellan in Am J Psychiatry, 154:1214-19; Prenatal screening for Toxoplasmosis with Bader and Macones in Obstet Gynecol, 90:457-64; The Philadelphia PRIME program: A model for primary care education with Bellini in Med
Educ Online, 2:2; and Costs, true costs, and whose costs in economic analysis in medicine? with Macones in Am J Managed Care, 3:915-7 published Crisis, Ethics and the American Medical Association: 1847 and 1997 with Arthur Caplan, Linda Emanuel, and Stephen Latham in the Journal of the American Medical Association, 278, pp 163-164 and Un modelo teórico le ética transcultural: postmodernismo, relativismo y el Código de Nuremberg, in Perspectivas Bioéticas en las Américas, :12-37 His book reviews of Advisory Committee on Human Radiation Experiments, The Human Radiation Experiments and Hans-Georg Gadamer, The enigma of health: the art of healing in a scientific age, recently appeared in Medical History, v 41 Dr Bakers recent talks include History of the Goals of Medicine The Goals of Medicine: Priorities for the Future, co-sponsored by the Hastings Center and Istituto Italiano per gle Studi Filosofici in Naples, Italy this past June and Revolutionizing the Researcher-Patient Relationship:
A Historical Analysis, at the XI Annual Conference of the European Society for Philosophy, Medicine and Healthcare Collegio Antonianium in Padova, Italy in August Together with Laurence McCullough of the Center for Medical Ethics and Health Policy of the Baylor College of Medicine, he has been commissioned by Cambridge University Press to co-edit the first English-language history of medical ethics It is a five-year project, that will involve over fifty authors; the anticipated publication date is 2002 new book Due Consideration: Controversy in the Age of Medical Miracles, published by John Wiley and Sons, Inc has just been released His upcoming speaking engagements include: Har Zion Temple in Gladwyn, PA on November 23 for information, contact Rabbi Gerald Wolpe at 610-667-5000, the Kaner Lecture at the Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire on November 24 contact Dr Richard Dow at 603-650-7400, Changing Conceptions: How Science and Law are Shaping Future
Generations at the Kent College of Law, Illinois Institute of Technology in Chicago on December 5 contact Lori Andrews at 312-9065000, the ethics talk on Informed Consent? at McGill University in Montreal on December 16 contact Gerald Baptist, Grand Rounds at the Dana Farber Cancer Institute in Boston on January 12 contact Zeke Emanuel at 215-898-7136, and the University of Puget Sound in Tacoma, Washington on February 18 for information, call 206-756-3205 will be speaking on March 13 at the AMA Conference on Genetic Medicine and the Practicing Physician, in New Orleans and on March 16 at the Bowman Gray School of Medicine Seminar on academic-industry relations and conflicts of interest in medical research has published Community equipoise and the architecture of clinical research with Lantos in Cambridge Quarterly of Healthcare Ethics, 6:385-96 and Permissible risk and acceptable benefit: The ethics of research involving the cognitively impaired in FORUM: Trends in Experimental and
Clinical Medicine, 7: 39-49 He recently presented Nursing home research: The positive effect of instructions for authors on the quality of reported research ethics at the Third International Congress on Biomedical Peer Review and Global Communications in Prague, Czech Republic in September and Are waivers and modifications of informed consent in research guided by adequate regulations? Or, informed consent: How do I waive thee? Let me count the ways with Curt Naser and Jon Merz at the 1997 Joint Meeting of the American Association of Bioethics, the Society for Bioethics Consultations, and the Sociey for Health and Human Values Annual Meeting in Baltimore on November 5-9, 1997 His upcoming talks include Legal and ethical decisions: Protecting your client for the Alzheimers Disease Seminar Series, jointly sponsored by the University of Pennsylvania Boettner Center of Financial Gerontology and Institute on Aging, the Bryn Mawr Trust Company, and The Alzheimers Association on January 22,
1998 was Co-Chairman of the American Thoracic Society Bioethics Task Force responsible for the position paper Fair Allocation of Intensive Care Unit Resources published in the American Journal of Respiratory Critical Care Medicine in October The paper was also officially endorsed by the American Association of Critical Care Nurses, the American College of Physicians, and the Society of Critical Care Medicine
Robert Baker
Art Caplans
Mildred Cho
Jason Karlawish
Paul Lanken
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Donald Light
gave the inaugural lecture on The real ethics of rationing at the Institute of Medicine, Law and Bioethics at the University of Manchester, England Part of it was published in the BMJ 1997; 315:112-115 He gave talks in London, Manchester, and Swansea Wales in July Two more articles on organizational arrangements that lead to more rationing at the bedside will soon appear in the Health Service Journal London He is working with Art Caplan on the ethics of managed care has co-organized a series
of sessions on normative issues in genetics for the International Society for the History, Philosophy, and Social Studies of Biology meeting in Seattle, Washington July 17-20; presented a paper, The Concept of Genetic Disease, at the same meeting; has become treasurer and chief operating officer for the Society; will be presenting a paper on The Implications of our Conceptions of Genetic Disease at the American Association of Bioethics meeting in Baltimore, Nov 6; will be a panelist for a session organized by Glenn McGee on genetics and public health at the American Public Health Association meeting in Indianapolis, November 10; will be presenting a paper on Genetic Programs–implications for society at the SLOAN sponsored workshop, Knowability of Scientific Entities: Genes and Genetic Programs, Dec 6, Oxnard, California; has agreed to write a book review for ISIS; and his Evolution without Change in Gene Frequencies will appear shortly in Biology and Philosophy gave Grand Rounds at
Methodist Hospital and Germantown Hospital on ethical issues in managed care and at DuPont Childrens Hospital on Prozac and Pediatrics, and joined Penn President Judith Rodin for a discussion of Ethics and Genetics in London in September He gave the Waxman DNA Lecture at Iowa State in October Upcoming talks include grand rounds October 15 at Wilmington Hospital, a lecture to Zeneca Pharmaceutical staff on ethics and genetics in Berkeley October 27, a public talk at both CDC and Emory University October 29th, lectures at UNESCO Bioethics Summit in Kobe, Japan November 4-6, a session on genetics and public health at APHA in Indianapolis October 10, and a debate with LeRoy Hood at the University of Montana November 15th He published A Crossroads in Ethics and Genetic Counseling with Monica Arruda in Cambridge Quarterly, and Moral Issues in Oocyte and Embryo Donation with A Caplan and J Anchor in M Sauer, ed, Egg and Oocyte Donation 1997: Springer gave a talk entitled: Stupid Patents:
Disease Gene Patenting is a Bad Innovation at Carnegie Mellon University on September 25 A related commentary coauthored with Mildred Cho, Madeline Robertson, and Debra Leonard criticizing the patenting of genetic diagnosis of specific genetic mutations will appear in the December issue of Molecular Diagnosis He also gave a lecture on bioethics at the Philadelphia College of Textiles and Science on September 22, and presented a paper on genetic technology in clinical and research medicine in a regional conference organized by CMU Student Pugwash entitled Technologies of Peace on September 26-28 presented talks on Is Cost-Effectiveness a Morally Acceptable Way to Set Health Care Priorities? at Duke University and St Vincents Medical Center of Richmond in Staten Island, NY Should Physicians Ever Ration Whatever That Means at Duke University and at Presbyterian University Hospital in Philadelphia His recent publications include Rationing By Any Other Name with Asch in NEJM, 336: 1668 -
1671 and Kidney Transplant Candidates Views of the Transplant Allocation System with Louis and Sankar in JGIM, 12:478-484 His article with Arnold and Caplan on Rationing Failure: Ethical Lessons of Retransplantation was selected as a chapter in Pences Classic Works in Medical Ethics: Core Philosphical Readings, McGraw-Hill Dr Ubel will receive the 1997 Award for Outstanding Paper by a Young Investigator from the Society for Medical Decision Making at its Annual Meeting in Houston later this year
David Magnus
Glenn McGee
Jon Merz
Peter Ubel
Paul Root Wolpe has recently had articles appear on genetic essentialism in The Kennedy Institute for Ethics Journal, on umbilical cord blood ethics in the Journal of the American Medical Association, and on new emergency room informed consent rules in the Forum for Applied Research and Public Policy He has spoken on genetics at Drexel university and Temple university, and has lectured at Penn medical school on socialization into the medical
profession and social and cultural views of death and dying Coming up soon are two sessions at the American Association of Bioethics conference in November on genetics and on social science and bioethics, and a talk to the American Medical Students Association He was a co-Principle Investigator of the NIH grant on genetic testing awarded to the Center, along with Principle Investigator Mildred Cho and co-PI Pamela Sankar
7
Calendar1997/98
December 7, 1997 TUSKEGEE: Can Past Lessons Guide Research in the Future? The Annual Meeting of Applied Research Ethics National Association ARENA To be held at The Sheraton Hotel, Boston, MA Topics to be addressed include: The impending challenges for IRBs; the Tuskegee legacy; IRB liability issues; Regulatory updates from the FDA and OPRR For more information, contact: ARENA, 132 Boylston Street, Boston, MA 02116 Phone: 617-4234112; Fax: 617-423-1185 E-mail: PRMR@AOLCOM http://wwwaamcorg/research/primr December 8, 1997 Ethical Research in an
Ethical SocietyAnnual meeting of Public Responsibility in Medicine and Research PRIMR To be held in conjunction with the above posted conference at The Sheraton Hotel, Boston, MA For more information, contact: ARENA, 132 Boylston Street, Boston, MA 02116 Phone: 617-4234112; Fax: 617-423-1185 E-mail: PRMR@AOLCOM http://wwwaamcorg/research/primr December 16, 1997 Biomedical Ethics: A Symposium to Honour the Memory of Dr Benjamin Freedman, sponsored by McGill University Centre for Translational Research in Cancer, McGill Biomedical Ethics Unit, and the Jewish General Hospital Research Ethics Office This event will be held in the Block Amphitheatre, Sir Mortimer B Davis-Jewish General Hospital of McGill University in Montreal For further information contact: Dr Gerald Batist at tel: 514-3407915, fax: 514-340-7916 or e-mail: GBatist@oncJGHMcGillCA January 23-24, 1998 The 25th Anniversary of Roe v Wade, co-sponsored by the Center for Bioethics at the University of Pennsylvania and Boston
University will be held on the campus of Boston University For further information, contact George Annas at annasgj@buedu or fax 617-638-5299 February 26-28, 1998 Seventh Annual Meeting of the Association for Practical and Professional EthicsTo be held in Dallas, Texas Highlights will include a keynote address, Ethical Systems and Public Policy: The National Bioethics Advisory Commission Experience, by Harold Shapiro, President of Princeton University The Fourth Intercollegiate Ethics Bowl will again be held in conjunction with the Annual Meeting on Thursday, as will the Ethics Center Colloquium For more information on the program, contact the Association at 410 North Park Avenue, Bloomington, IN 47405; phone 812-855-6450; Fax: 812-855-3315; e-mail: appe@indianaedu; http://phpucsindianaedu/appe/homehtml March 13-14, 1998 20th Anniversary Conference sponsored by the Department of Medical Humanities, East Carolina University To be held in conjunction with the spring meeting of the
Society for Health and Human Values To be held in Greenville, NC The conference will be divided into two sections: March 13th: Decisions at the End of Life Presentations by Dan Brock, Arthur L Caplan, Laurie Zoloth-Dorfman, H Tristram Engelhardt, Jr, Steven Miles and Stuart Youngner March 14th: David Hume and Bioethics Presentations by Tom Beauchamp, Larry Churchill, Ray Frey, Loretta M Kopelman and Larry McCullough For more information, contact: Program Committee, Department of Medical Humanities, East Carolina University School of Medicine, Brody 2S-17, Greenville, NC 27858 May 3 and 4, 1998 A conference on the state of Jewish Bioethics at the turn of the millennium will bring together international scholars in Philadelphia sponsored by Allegheny University of Health Sciences, The Center for Bioethics at the University of Pennsylvania, The Finkelstein Institute of the Jewish Theological Seminary, The Jewish Museum, and the Israel 50 Committee For information, contact Paul Root Wolpe
at 215-898-7136 or D Walter Cohen at 215-8427008 May 21 and 22, 1998 Families on the Frontier of Dying A conference at the Ritz Carlton Hotel in Philadelphia For information, contact Sally Nunn at sjnunn@aolcom or at Shore Memorial Hospital, 1 East New York Ave, Somers Point, NJ 08244-2387 These listings are from our calendar and the International Calendar of Bioethics Events from the Division for Medical Humanities at the University of Medicine and Dentistry of New Jersey - Robert Wood Johnson Medical School For more details see their website at http://www2umdnjedu/ethicweb/upcomehtm
In thisIssue
Art Caplan on Bioethics and Business Glenn McGee on Payment for Research Participants David Magnus on Genetics and Education Paul Root Wolpe on Alternative Medicine
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