What price better health?: Hazards of the research imperative

What Price Better Health?: Hazards of the Research Imperative

Volumn , Issue , 2003, Pages

  Callahan, Daniel ^a,b  

^a HASTINGS CENTER   (United States)

^b HARVARD MEDICAL SCHOOL   (United States)

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[No Author keywords available]

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EID: 84887758277     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Book

References (580)

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154. Carron et al., "End-of-Life Care.".
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156. Callahan, Troubled Dream of Life.
157. Anthony J. Vita et al., "Aging, Health Risk, and Cumulative Disability," New England Journal of Medicine 338 (1998): 1035-41.
158. Gerald J. Gruman, "Cultural Origins of Present-Day 'Ageism': The Modernization of the Life Cycle," in Aging and the Elderly: Humanistic Perspectives in Gerontology, ed. Stuart F. Spicker et al. (Atlantic Highlands,N.J.: Humanities Press, 1978), 359-87.
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161. Daniel Callahan, "Aging and the Ends of Medicine," in Biomedical Ethics: An Anglo-American Dialogue, ed. Daniel Callahan and G. R. Dunstan (New York: New York Academy of Sciences, 1988), 125-32.
162. Timothy F. Murphy, "A Cure for Aging?" Journal of Medicine and Philosophy 11 (1986): 237-55.
163. T. B. L. Kirkwood, "Is There a Limit to the Human Life Span?" in Longevity: To the Limit and Beyond, ed. Jean-Marine Robine, James W.Vaupel, and Michael Bernard Jeune (Berlin: Springer, 1997), 69-76.
164. Ali Ahmed and Trygve Tollefshol, "Telomeres and Telomerase: Basic Science Implications for Aging," Journal of the American Geriatric Society 49 (2000): 1105-9.
165. Jim Oeppen and James W. Vaupel, "Broken Limits to Life Expectancy," Science 296 (2002): 1029-31.
166. Shiro Horiuchi, "Greater Lifetime Expectations," Nature 405 (2000): 744-45.
167. S. J. Olshansky, "Practical Limits to Life Expectancy in France," in Longevity: To the Limit and Beyond, 1-10.
168. James W.Vaupel, "The Average French Baby May Live 99 or 100 Years," in Longevity: To the Limit and Beyond, 11-27.
169. Kirkwood, "Is There a Limit?" 75.
170. Michael R. Rose, "Aging as a Target for Genetic Engineering," in Engineering the Human Germline, ed. Gregory Stock and John Campbell (New York: Oxford University Press, 2000), 54.
171. James W. Vaupel et al., "Biodemographic Trajectories of Longevity," Science 280 (1998): 855-60.
172. James R. Carey and Debra S. Judge, "Life Span Extension in Humans Is Self-Reinforcing: A General Theory of Longevity," Population and Development Review 27 (2001): 411-36.
173. E. Timmer et al., Variability of the Duration of Life of Living Creatures (Amsterdam: IOS Press, 2000), 161-91.
174. Daniel Perry, "The Rise of the Gero-Techs," Genetic Engineering News 20 (2000): 57-58.
175. See Callahan, "Aging and the Ends of Medicine," 125-32; Victor R. Fuchs, "Medicare Reform: The Larger Picture," Journal of Economic Perspectives 14 (2000): 57-70.
176. David M. Cutler, "Walking the Tightrope on Medicare Reform," Journal of Economic Perspectives 14 (2000): 45-56.
177. Mark McClellan, "Medicare Reform: Fundamental Problems, Incremental Steps," Journal of Economic Perspectives 14 (2000): 21-44.
178. John Harris, "Intimations of Mortality," Science 288 (2000): 59.
179. Diego Garcia, "What Kind of Values? A Historical Perspective on the Ends of Medicine," in The Goals of Medicine: The Forgotten Issue in Health Care Reform, ed. Mark J. Hanson and Daniel Callahan (Washington, D.C.: Georgetown University Press, 1999), 88-100.
180. Christopher Boorse, "On the Distinction between Disease and Illness," Philosophy and Public Affairs 5, 1 (1975): 49-68.
181. Christopher Boorse, "Health as a Theoretical Concept," Philosophy of Science 44 (1977): 542-73.
182. Robert Wachbroit, "Health and Disease, Concepts of," in Encyclopedia of Applied Ethics, ed. Ruth Chadwick (San Diego: Academic Press, 1998), 533-38.
183. Arthur L. Caplan, "The Concepts of Health, Illness, and Disease," in Medical Ethics, ed. Robert M. Veatch (Sudbury, Mass.: Jones and Bartlett, 1997), 57-74.
184. H. Tristram Engelhardt Jr., "The Disease of Masturbation: Values and the Concept of Disease," in Contemporary Issues in Bioethics, ed. Tom L. Beauchamp and LeRoy Walters (Belmont, Calif.:Wadsworth, 1989), 85-89.
185. George Khushf, "Expanding the Horizon of Reflection on Health and Disease," Journal of Medicine and Philosophy 20 (1995): 461-73.
186. Robert M. Sade, "A Theory of Health and Disease: The Objectivist- Subjectivist Dichotomy," Journal of Medicine and Philosophy 20 (1995): 513-25.
187. Boorse, "On the Distinction between Disease and Illness"; Boorse, "Health as a Theoretical Concept"; James G. Lennox, "Health as an Objective Value," Journal of Medicine and Philosophy 20 (1995): 499-511.
188. Tom L. Beauchamp, "Concepts of Health and Disease," in Contemporary Issues in Bioethics, 73-79.
189. World Health Organization, "A Definition of Health," in Contemporary Issues in Bioethics, 79.
190. Daniel Callahan, "The WHO Definition of Health," Hastings Center Studies 1, no. 3 (1973): 77-88.
191. John Knowles, "Introduction," Daedalus 106 (1997): 1-7.
192. Arthur Barsky, Worried Sick: Our Troubled Quest for Wellness (Boston: Little, Brown, 1998).
193. Robert G. Evans, Morris L. Bauer, and Theodore R. Marmor, eds., Why Are Some People Healthy and Others Not: The Determinants of Health in Populations (New York: Aldine de Gruyter, 1994).
194. I drew up the goals for a project, published as "The Goals of Medicine: Setting New Priorities," Hastings Center Report 26, s.s. (1996).
195. Mark J. Hanson, "The Idea of Progress and the Goals of Medicine," in The Goals of Medicine:The Forgotten Issue in Health Care Reform, ed. Mark J. Hanson and Daniel Callahan (Washington, D.C.: Georgetown University Press, 1999), 137-51.
196. Edmund D. Pellegrino, "The Goals and Ends of Medicine: How Are They to Be Defined?" in Goals of Medicine, 55-68.
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198. Fernando Lolas, "On the Goals of Medicine: Reflections and Distinctions," in Goals of Medicine, 216-20.
199. Eric Cassell, personal communication, 2000.
200. Daniel Callahan, False Hopes:Why America's Quest for Perfect Health Is a Recipe for Failure (New York: Simon and Schuster, 1998).
201. Daniel Callahan, What Kind of Life: The Limits of Medical Progress (Washington, D.C.: Georgetown University Press, 1990).
202. Hippocrates, The Art (Cambridge,Mass.: Harvard University Press, Loeb Classical Library, 1923), 193.
203. J. M. McGinnis and W. H. Foege, "Actual Causes of Death in the United States," Journal of the American Medical Association 270 (1993): 2207-12.
204. Eric J. Cassell, "Pain, Suffering, and the Goals of Medicine," in Goals of Medicine, 101-17.
205. René Descartes, "Discourse on the Method of Rightly Conducting the Reason and Seeking for the Truth in the Sciences," in The Philosophical Works of Descartes (Cambridge: Cambridge University Press, 1981), 120.
206. Erik Parens, "Is Better Always Good? The Enhancement Project," Hastings Center Report 28, no. 1 (1998): S1-17.
207. Norman Daniels, "Normal Functioning and the Treatment-Enhancement Distinction," Cambridge Quarterly of Healthcare Ethics 9 (2000): 309-22.
208. Anita Silvers, "A Fatal Attraction to Normalizing," in Enhancing Human Traits: Ethical and Social Implications, ed. Erik Parens (Washington, D.C.: Georgetown University Press, 1998).
209. Susan Bordo, "Braveheart, Babe, and the Contemporary Body," in Enhancing Human Traits, 189-221.
210. Dan W. Brock, "Enhancements of Human Function: Some Distinctions for Policy Makers," in Enhancing Human Traits, 48-69.
211. See Allen Buchanan et al., eds., From Chance to Choice: Genetics and Justice (New York: Cambridge University Press, 2001).
212. Parens, "Is Better Always Good?".
213. John Harris, Wonderwoman and Superman: The Ethics of Biotechnology (Oxford: Oxford University Press, 1992), ch. 7.
214. Michael H. Shapiro, "The Technology of Perfection: Performance Enhancement and the Control of Attributes," Southern California Law Review 65 (1991): 11-14.
215. Nick A. Ghaphrey, "Performance-Enhancing Drugs," Orthopedic Clinics of North America 26 (1995): 433-42.
216. Parens, "Is Better Always Good?".
217. Robert Plomin, John C. DeFries, Gerald E. McClearn, and Peter Guffin, Behavioral Genetics, 43d ed. (New York:Worth Publishers, 2001), esp. chs. 5 and 6, 156-203.
218. Robert Plomin and Gerald E. McLearn, eds., Nature, Nurture, and Psychology (Washington, D.C.: American Psychological Association, 1993).
219. Daniel Goleman, Emotional Intelligence: Why It Can Matter More Than IQ (New York: Bantam Books, 1995).
220. Howard Gardner, Frames of Mind: The Theory of Multiple Intelligences (New York: Basic Books, 1983).
221. Richard Roberts, Gerald Matthews, and Moshe Zeidner, "Does Emotional Intelligence Meet Traditional Standards for Intelligence? Some New Data and Conclusions," Emotion 1 (2001): 196-231.
222. Gardner, Frames of Mind, ix, xi.
223. Goleman, Emotional Intelligence.
224. Robert Plomin, "Genetics and General Cognitive Ability," Nature 402 (1999): c 27.
225. Jonathan Beckwith, "Simplicity and Complexity: Is IQ Ready for Genetics?" Current Psychology of Cognition 18 (1999): 161-69.
226. Daniels, "Normal Functioning and Treatment-Enhancement"; and Ainsley Newson and Robert Williamson, "Should We Undertake Genetic Research on Intelligence?" Bioethics 13 (1999): 327-42.
227. Newson and Williamson, "Should We Undertake Genetic Research?" 327.
228. Gerald L. Klerman, "Psychotropic Hedonism vs. Pharmacological Calvinism," Hastings Center Report 2, no. 4 (1972): 1-3.
229. See Jacquelyn Slomka, "Playing with Propranolol," Hastings Center Report 22, no. 4 (1992): 13-17.
230. Lawrence H. Diller, "The Run on Ritalin: Attention Deficit Disorder and Stimulant Treatment in the 1990s," Hastings Center Report 26, no. 4 (1996): 12-18.
231. Peter D. Kramer, Listening to Prozac (New York:Viking, 1993).
232. John A. Robertson, Children of Choice: Freedom and the New Reproductive Technologies (Princeton: Princeton University Press, 1994).
233. Glenn McGee, The Perfect Baby: A Pragmatic Approach to Genetics (Lanham, Md.: Rowman and Littlefield, 1997).
234. Glenn McGee, "Parenting in an Era of Genetics," Hastings Center Report 27, no. 2 (1997): 16-22.
235. Glenn McGee, "Ethical Issues in Enhancement: An Introduction," Cambridge Quarterly of Healthcare Ethics 9 (2000): 299-303.
236. Thomas Murray, The Worth of a Child (Berkeley: University of California Press, 1996).
237. See Marcel Verweij and Frank Kortmann,"Moral Assessment of Growth Hormone Therapy for Children with Idiopathic Short Stature," Journal of Medical Ethics 23 (1997): 305-9.
238. Leona Cuttler et al., "Short Stature and Growth Hormone Therapy: A National Study of Physician Recommendation Patterns," Journal of the American Medical Association 276 (1996): 531-37.
239. Sharon E. Oberfield, "Growth Hormone Use in Normal Short Children-a Plea for Reason," New England Journal of Medicine 340 (1999): 557-59.
240. Otto Westphal, "Is Short Stature a Psychosocial Handicap?" Acta Paediatrica Scandinavica 362, s. (1989): 24-26.
241. Joel Feinberg, "The Child's Right to an Open Future," in Whose Child? Children's Rights, Parental Authority, and State Power, ed. William Aiken and Hugh LaFollete (Totowa, N.J.: Rowman and Littlefield, 1980), 124-53.
242. Theresa Marteau, Susan Michie, Harriet Drake, and Martin Bobrow, "Public Attitudes towards the Selection of Desirable Characteristics in Children," Journal of Medical Genetics 32 (1995): 796-98.
243. Michel Houellebecq, The Elementary Particles, trans. Frank Wynne (New York: Knopf, 2000).
244. Lee M. Silver, "Can You Make My Kid Smarter?" Time, 8 November 1999, 68-69.
245. Troy Duster, Back Door to Eugenics (New York: Routledge, 1990).
246. Garland E. Allen, "Is a New Eugenics Afoot?" Science 294 (2001): 59-61.
247. James D.Watson, "All for the Good," Time, 11 January 1999, 91.
248. Watson is by no means representative of most scientists, and many will cringe at his reasoning here. But it is not a trivial matter when he is given a full page in Time magazine to express his views.
249. "Mapping Ourselves,"Wall Street Journal, 27 June 2000, A-30.
250. Council on Competitiveness (Washington, D.C., 1998), 48.
251. Kirkpatrick Sale,"Ban Cloning? Not a Chance," New York Times, 7 March 1997, op ed.
252. Laurence H. Tribe, "Second Thoughts on Cloning," New York Times, 5 December 1997, A-31.
253. Richard C. Lewontin, "The Confusion over Cloning," New York Review of Books, 23 October 1997.
254. Gregory E. Pence, Who's Afraid of Human Cloning? (Lanham, Md.: Rowman and Littlefield, 1998), 172 and 64.
255. Daniel J. Kevles, "Study Cloning, Don't Ban It," New York Times, 26 February 1997, A-23.
256. Daniel Callahan, What Kind of Life? The Limits of Medical Progress (Washington, D.C.: Georgetown University Press, 1990).
257. Leon R. Kass, "The Wisdom of Repugnance: Why We Should Ban the Cloning of Humans," New Republic, 2 June 1997, 17-26.
258. Sidney Callahan, In Good Conscience: Reason and Emotion in Moral Decision Making (San Francisco: San Francisco Harper, 1991).
259. Richard Rhodes, The Making of the Atomic Bomb (New York: Simon and Schuster, 1986), 784.
260. D. Ian Hopper, "U.S. Sets Funding Rules on Embryo Cell Research," Chicago Sun Times, 23 August 2000, A-10-11.
261. Rhodes, Making of the Atomic Bomb, 92-93.
262. Kenneth R. Foster, Paolo Vecchia, and Michael H. Repacholi, "Science and the Precautionary Principle," Science 288 (2000): 979.
263. Carl F. Cranor, "Asymmetric Information, the Precautionary Principle, and Burdens of Proof," in Protecting Public Health and the Environment: Implementing the Precautionary Principle, ed. Carolyn Raffensperger and Joel A. Tickner (Washington, D.C.: Island Press, 1999), 83-84.
264. Foster et al., "Science and the Precautionary Principle.".
265. John Harris and Soren Holm, "Extending Human Lifespan and the Precautionary Paradox," Journal of Medicine and Philosophy 27, no. 3 (2002): 355-68.
266. Andrew Jordan and Timothy O'Riordan, "The Precautionary Principle in Contemporary Environmental Policy and Politics," in Protecting Public Health and the Environment: Implementing the Precautionary Principle, ed. Carolyn Raffensperger and Joel A. Tickner (Washington,D.C.: Island Press, 1999), 15-35.
267. William J. Broad, "U.S. Tightening Rules on Keeping Scientific Secrets," New York Times, 17 February 2002, A-1.
268. Judith Miller, Germs: Biological Weapons and America's Secret War (New York: Simon and Schuster, 2001).
269. Matthew Meselson, "Bioterror: What Can Be Done?" New York Review of Books, 20 December 2000, 41.
270. Susan Lederer, Subjected to Science: Human Experimentation in America before the Second World War (Baltimore: Johns Hopkins University Press, 1995), xiv.
271. Matthew Miller, "Phase I Cancer Trials: A Collusion of Misunderstanding," Hastings Center Report 30, no. 4 (2000): 34.
272. Lederer, Subjected to Science, 1.
273. Robert J. Levine, Ethics and Regulation of Clinical Research (Baltimore: Urban and Schwarzenberg, 1981).
274. George J. Annas and Michael A. Grodin, "Historical Origins of the Nuremberg Code," in The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation, ed. George J. Annas and Michael A. Grodin (New York: Oxford University Press, 1992), 67.
275. Robert Proctor, "Nazi Doctors, German Medicine, and Human Experimentation," in Nazi Doctors and the Nuremberg Code, 28-29.
276. John Miller Turpin Finney, A Surgeon's Life (New York: G. P. Putman Sons, 1940), 127.
277. Michael A. Grodin, "Historical Origins of the Nuremberg Code," in Nazi Doctors and the Nuremberg Code, 128, 129, 131.
278. David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (New York: Basic Books, 1991), 31.
279. Jonathan Moreno, Undue Risk: Secret State Experiments on Humans (New York:W. H. Freeman, 1999), 140-41.
280. Advisory Committee on Human Radiation Experiments, Final Report of the Advisory Committee on Human Radiation Experiments (New York: Oxford University Press, 1996), 512-40, 543, 545.
281. Moreno, Undue Risk; and Sharon Perley et al., "The Nuremberg Code: An International Overview," in Nazi Doctors and the Nuremberg Code, 149-73.
282. Baruch Brody, Ethics of Biomedical Research: An International Perspective (New York: Oxford University Press, 1998), 157.
283. World Medical Association, "The Declaration of Helsinki," Journal of the American Medical Association 277 (1997): 925-26.
284. Perley, "Nuremberg Code," 160.
285. Brody, Ethics of Biomedical Research, 36-37.
286. Henry K. Beecher, "Ethics and Clinical Research," New England Journal of Medicine 274 (1966): 1354-60.
287. M. H. Pappworth, Human Guinea Pigs: Experimentation with Man (Boston: Beacon Press, 1967).
288. Jay Katz, "'Ethics and Clinical Research' Revisited: A Tribute to Henry K. Beecher," Hastings Center Report 23, no. 5 (1993): 31-39.
289. Moreno, Undue Risk; Beecher, "Ethics and Clinical Research"; and Henry K. Beecher, "Some Guiding Principles for Clinical Investigation," Journal of the American Medical Association 195 (1966): 1135-36.
290. Jay Katz, Experimentation with Human Beings (New York: Russell Sage Foundation, 1972), 84, 37.
291. James Jones, Bad Blood (New York: Free Press, 1981).
292. Allan Brandt, "Racism and Research," Hastings Center Report 8, no. 6 (1978): 20-29.
293. David J. Rothman, "Were Tuskegee & Willowbrook 'Studies in Nature'?" Hastings Center Report 12, no. 2 (1982): 5.
294. William J. Curran, "Governmental Regulation of the Use of Human Subjects in Medical Research: The Approach of Two Federal Agencies," in Experimenting with Human Subjects, ed. Paul A. Freund (New York: George Braziller, 19691).
295. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, "The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research" (Washington, D.C.: Government Printing Office, 1978).
296. "United States Regulatory Requirements for Research Involving Human Subjects," Journal of Biolaw &Business 1 (1998): 39-44.
297. John H. Evans, "A Sociological Account of the Growth of Principlism," Hastings Center Report 30, no. 5 (2000): 31-38.
298. Trudo Lemmens and Alison Thompson, "Noninstitutional Commercial Review Boards in North America," IRB Ethics and Human Research 23, no. 2 (2001): 1-12.
299. Francis D. Moore, "Therapeutic Innovation: Ethical Boundaries in the Initial Clinical Trials of New Drugs and Surgical Procedures," in Experimenting with Human Subjects, ed. Paul A. Freund (New York: George Braziller, 1969), 365.
300. World Medical Association, "Declaration of Helsinki," British Medical Journal 313, no. 7070 (1996): 1448-49.
301. Annas and Grodin, "Historical Origins of the Nuremberg Code," 278.
302. Beverly Woodward, "Challenges to Human Subject Protections in US Medical Research," Journal of the American Medical Association 282 (1999): 1947-52.
303. Office of Inspector General, Institutional Review Boards: A Time for Reform (Washington,D.C.: Department of Health and Human Services, 1998), 1.
304. Remarks of Jane Henny, commissioner, U.S. Food and Drug Administration, made at a meeting of the Association of American Medical Colleges, Council of Teaching Hospitals,Washington, D.C., 11 May 2000.
305. Donna Shalala, "Protecting Research Subjects-What Must Be Done," New England Journal of Medicine 343 (2000): 808-10.
306. Charles Marwick, "New Head of Federal Office Clear on Protecting Human Research Participants," Journal of the American Medical Association 284 (2000): 1501. Dr. Koski resigned from that position in fall 2002.
307. Jonathan Moreno, "Goodbye to All That: The End of Moderate Protectionism in Human Subjects Research," Hastings Center Report 31, no.3 (2001): 9-17.
308. Woodward, "Challenges to Human Subject Protections,"1947-52.
309. Code of Federal Regulations, "Protection of Human Subjects," Title 45, ch. A, subch. A, part 46.
310. Albert R. Jonsen, "The Weight and Weighing of Ethical Principles," in The Ethics of Research Involving Human Subjects: Facing the 21st Century, ed. Harold Y. Vanderpool (Frederick, Md.: University Publishing Group, 1996), 59-82.
311. Brody, Ethics of Biomedical Research, 45-48; and 45 CFR 46.
312. Katz, Experimentation with Human Beings.
313. Stanley Milgram, "Some Conditions of Obedience and Disobedience to Authority," International Journal of Psychiatry 6 (1968): 259-76.
314. David Wendler, "Deception in Medical and Behavioral Research: Is It Ever Acceptable?" Milbank Quarterly 74 (1996): 87-114.
315. Mathilda B. Canter et al., Ethics for Psychologists: A Commentary on the APA Ethics Code (Washington, D.C.: American Psychological Association, 1994).
316. Allan J. Kimmel, Ethical Issues in Behavioral Research: A Survey (Cambridge, Mass.: Blackwell Publishers, 1996).
317. Patricia Keith-Spiegel and Gerald P. Koocher, Ethics in Psychology: Professional Standards and Cases (New York: Random House, 1985).
318. 45 CFR 46, subpart A, §46.111; and Brody, Ethics of Biomedical Research, 48-49.
319. Woodward, "Challenges to Human Subject Protections.".
320. Gina Kolata, "Ban on Medical Experiments without Consent Is Relaxed," New York Times, 5 November 1996, A-1.
321. Loretta M. Kopelman, "Children as Research Subjects: A Dilemma," Journal of Medicine and Philosophy 25 (2000): 745-64.
322. Rebecca Dresser, "Mentally Disabled Research Subjects," Journal of the American Medical Association 276 (1996): 67-72.
323. William J. Carpenter, Nina R. Schooler, and John M. Kane, "The Rationale and Ethics of Medication-Free Research in Schizophrenia," Archives of General Psychiatry 54 (1997): 401-7.
324. Richard J. Bonnie, "Research with Cognitively Impaired Subjects: Unfinished Business in the Regulation of Human Research," Archives of General Psychiatry 54 (1997): 105-23.
325. Alexander Capron, "Ethical and Human-Rights Issues in Research on Mental Disorders That May Affect Decision Making Capacity," New England Journal of Medicine 340 (1999): 1433.
326. Advisory Committee, Final Report on Human Radiation Experiments, 405.
327. Brody, Ethics of Biomedical Research, 37-38.
328. Levine, Ethics and Regulation of Clinical Research.
329. Franklin G. Miller, Donald L. Rosenstein, and Evan G. DeRenzo, "Professional Integrity in Clinical Research," Journal of the American Medical Association 280 (1998): 1454.
330. Miller, "Phase I Cancer Trials"; and Robert P. Kelch, "Maintaining the Trust in Clinical Research," New England Journal of Medicine 346 (2002): 285-87.
331. George J. Annas, "Questing for Grails: Duplicity, Betrayal and Self- Deception in Postmodern Medical Research," Journal of Contemporary Health Law Policy 12 (1996): 300, 314.
332. Robert M. Veatch," 'Experimental' Pregnancy," Hastings Center Report 1, no. 1 (1971): 2-3.
333. Peter Lurie and Sidney M.Wolfe, "Unethical Trials of Interventions to Reduce Perinatal Transmission of the Human Immunodeficiency Virus in Developing Countries," New England Journal of Medicine 337 (1997): 853-56.
334. Marcia Angell, "The Ethics of Clinical Research in the Third World," New England Journal of Medicine 337 (1997): 847.
335. Harold Varmus and David Satcher, "Ethical Complexities of Conducting Research in Developing Countries," New England Journal of Medicine 337 (1997): 1003-5.
336. Barry R. Bloom, "The Highest Attainable Standard: Ethical Issues in AIDS Vaccines," Science 279 (1998): 187-88.
337. David J. Rothman, "The Shame of Medical Research," New York Review of Books, 30 November 2000, 64.
338. National Bioethics Advisory Commission, Ethical and Policy Issues in International Research-Draft Report (Bethesda, 2000).
339. Bloom, "Highest Attainable Standard"; and Rothman, "Shame of Medical Research.".
340. George J Annas and Michael A. Grodin, "Human Rights and Maternal- Fetal HIV Transmission Prevention Trials in Africa," Amercan Journal of Public Health 88 (1998): 560-62.
341. Solomon R. Benatar and Peter A. Singer, "A New Look at International Research," British Medical Journal 321 (2000): 824.
342. Leonard H. Glantz et al., "Research in Developing Countries: Taking 'Benefit' Seriously," Hastings Center Report 28, no. 6 (1998): 38-42.
343. Robert M. Veatch,"From Nuremberg through the 1990s: The Priority of Autonomy," in The Ethics of Research Involving Human Subjects: Facing the 21st Century, ed. Harold Y. Vanderpool (Frederick, Md.: University Publishing Group, 1996).
344. Marcia Barinaga, "Asilomar Revisited: Lessons for Today?" Science 287 (2000): 1584-85.
345. "Genetics: Conference Sets Strict Controls to Replace Moratorium," Science 187 (1975): 931-34.
346. R. J. Jackson et al., "Expression of Mouse Interleukin-4 by a Recombinant Ectromelia Virus Suppresses Cytolytic Lymphocyte Responses and Overcomes Genetic Resistance to Mousepox," Journal of Virology 75 (2001): 1205-10.
347. James D.Watson, "Let Us Stop Regulating DNA Research," Nature 278 (1979): 113.
348. Charles Weiner, "Is Self Regulation Enough Today? Evaluating the Recombinant DNA Controversy," Health Matrix: Journal of Law-Medicine 9 (1999): 289-302.
349. Raymond A. Zilinskas and Burke K. Zimmerman, The Gene-Splicing Wars: Reflections on the Recombinant DNA Controversy (New York: Macmillan, 1986).
350. Sheldon Krimsky, Genetic Alchemy: The Social History of the Recombinant DNA Controversy (Cambridge, Mass.: MIT Press, 1982).
351. Barinaga, "Asilomar Revisited"; and "SCLR-Asilomar," Southern California Law Review 51 (1978).
352. "Researching Violence: Science, Politics, & Public Controversy," Hastings Center Report 9, no. 2 (1979): S6.
353. Patricia Jacobs, "Aggressive Behavior, Mental Sub-Normality, and the XYY Male," Nature 208 (1965): 1351.
354. Willard Gaylin, Ruth Macklin, and Tabitha M. Powledge, Violence and the Politics of Research (New York: Plenum Press, 1981), 100.
355. Barbara J. Culliton, "XYY: Harvard Researcher under Fire Stops Newborn Screening," Science 188 (1975): 1284-85.
356. Bernard Davis, "XYY: The Dangers of Regulating Research by Adverse Publicity," Harvard Magazine, 1976, 26-30.
357. Loretta M. Kopelman, "Ethical Controversies in Medical Research: The Case of XYY Screening," Perspectives in Biology and Medicine 21 (1978): 196-204.
358. "The XXY Controversy: Researching Violence and Genetics," Hastings Center Report 10, no. 4 (1980): S1-31.
359. Dr. Farris Tuma, quoted in Eileen O'Connor, "Caution Urged for Brain Research on Violence," CNN.com Health, 28 July 2000.
360. Stephanie L. Sherman et al., "Behavioral Genetics '97: ASGH Statement-Recent Developments in Human Behavioral Genetics: Past Accomplishments and Future Directions," American Journal of Human Genetics 60 (1997): 1265-75.
361. Erik Parens, "Taking Behavioral Genetics Seriously," Hastings Center Report 26, no. 4 (1996): 13-18.
362. Ruth Hubbard and Elijah Wald, Exploding the Gene Myth (Boston: Beacon Press, 1993).
363. E. O. Wilson, "The Attempt to Suppress Human Behavioral Genetics," Journal of General Education 29 (1978): 277-87.
364. Parens, "Taking Behavioral Genetics Seriously.".
365. Albert R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 1998), ch. 4.
366. Report of the Human Fetal Tissue Transplantation Research Panel (Bethesda: NIH, 1988), 4.
367. Arthur L. Caplan, "The Short, Exceedingly Strange Debate over Fetal Tissue Transplant Research," American Journal of Ethics & Medicine (1994): 24.
368. Curt R. Freed et al., "Transplantation of Embryonic Dopamine Neurons for Severe Parkinson's Disease," New England Journal of Medicine 344 (2001): 710-19.
369. Gerald D. Fischbach and Guy M. McKhann, "Cell Therapy for Parkinson's Disease," New England Journal of Medicine 344 (2001): 763-65.
370. Mary Warnock, Report of the Committee of Inquiry into Human Fertilisation and Embryology (London: HMSO, 1984).
371. Ethics Advisory Board of the U.S. Department of Health Education and Welfare, Embryo Research (Bethesda, 1979), 4.
372. National Bioethics Advisory Commission, Cloning Human Beings, vol. 1, Report and Recommendations of the National Bioethics Advisory Commission (Rockville, Md., 1997).
373. Committee on Science, Engineering, and Public Policy, Scientific and Medical Aspects of Human Reproductive Cloning (Washington, D.C.: National Academy Press, 2002).
374. Gretchen Vogel, "Cloning Bills Proliferate in U.S. Congress," Science 292 (2001): 1037.
375. Patient's Coalition for Urgent Research (CURe), Patient's CURe Overview (Washington, D.C.: CURe, 2000).
376. Caplan, "Short, Exceedingly Strange Debate"; and Ronald M. Green, "Stopping Embryo Research," Health Matrix: Journal of Law-Medicine 9 (1999): 235-52.
377. Gregory Stock and John Campbell, eds., Engineering the Human Germline (New York: Oxford University Press, 2000).
378. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Splicing Life: A Report on the Social and Ethical Issues of Genetic Engineering with Human Beings (Washington, D.C., 1982), 48.
379. Robert Cook-Deegan, "Germ-Line Gene Therapy: Keep the Window Open a Crack," Politics and Life Sciences 13 (1994): 217-48.
380. Joseph Fletcher, "Germ-Line Gene Therapy: The Costs of Premature Ultimates," Politics and Life Sciences 13 (1994): 225-27.
381. Stock and Campbell, Engineering the Human Germline. This would seem an instance of the "gambler's principle" at work.
382. Paul Billings et al., "Human Germline Gene Modification: A Dissent," Lancet 353 (1999): 1873-75; and this is an instance of a "precautionary principle" at work.
383. Parens, "Taking Behavioral Genetics Seriously.".
384. Robert P. Lanza et al., "The Ethical Validity of Using Nuclear Transfer in Human Transplantation," Journal of the American Medical Association 284 (2000): 3175.
385. National Bioethics Advisory Commission, Cloning Human Beings, 52.
386. Richard H. Nicholson, "The Greatest Happiness," Hastings Center Report 31, no. 1 (2001): 8.
387. Leon R. Kass and Daniel Callahan, "Band Stand: Cloning's Big Test," New Republic, 6 August 2001, 10-11; Daniel Callahan, "The Ethics of Cloning," testimony given to the Subcommittee on Crime, Committee of the Judiciary, U.S. House of Representatives, June 7, 2001 (Washington, D.C.: Government Printing Office, 2001).
388. Daniel Callahan, Abortion: Law, Choice, and Morality (London: Macmillan, 1970).
389. George J. Annas, Arthur L. Caplan, and Sherman Elias, "The Politics of Human Embryo Research-Avoiding Ethical Gridlock," New England Journal of Medicine 334 (1996): 1329-32.
390. Zogby International, "Views on Medical Advances, Genetic Testing, Cloning, Nanotechnology," July 6, 2001.
391. National Bioethics Advisory Commission, Ethical Issues in Human Stem Cell Research, vol. 1, Report and Recommendations of the National Bioethics Advisory Commission (Rockville,Md., 1999), 50.
392. Human Embryo Research Panel, Report of the Human Embryo Research Panel-Final Draft (Bethesda: NIH, 1994), 3; and Ethics Advisory Board, Embryo Research, 101.
393. Michael J. Meyer and Lawrence J. Nelson, "Respecting What We Destroy: Reflections of Human Embryo Research," Hastings Center Report 31, no. 1 (2001): 16-23.
394. National Bioethics Advisory Commission, Human Stem Cell Research, 51.
395. Eric Juengst and Michael Fossell, "The Ethics of Embryonic Stem Cells-Now and Forever, Cells without End," Journal of the American Medical Association 284 (2000): 3181.
396. National Bioethics Advisory Commission, Human Stem Cell Research, ii.
397. Francis Fukuyama, "How to Regulate Science," Public Interest 146 (2002): 20.
398. Gallup Poll, 30 April-2 May 2000, available at www.gallup.com. "With respect to the abortion issue, would you consider yourself to be pro-choice or pro-life?" 42 percent responded that they considered themselves to be pro-life (48 percent were pro-choice).
399. John H. Evans, Playing God: Human Genetic Engi1neering and the Rationalization of Public Bioethical Debate (Chicago: University of Chicago Press, 2002).
400. Richard Horton, "How Sick Is Modern Medicine?" New York Review of Books, 12 November 2000, 50.
401. Weiner, "Is Self Regulation Enough?" 297.
402. Patients' Coalition for Urgent Research (CURe), "Patients' CURe Overview" (Washington, D.C., 2000).
403. A 26 March 2001 letter to Tommy Thompson, secretary of health and human services, from Stanley O. Ikenberry, president, American Council on Education et al.
404. National Research Council and Institute of Medicine, Stem Cell Research and the Future of Regenerative Medicine (Washington, D.C.: National Academy Press, 2001).
405. Lori B. Andrews, The Clone Age (New York: Henry Holt, 1999), 206.
406. Robert L. Sinsheimer, "The Presumptions of Science," Daedalus 107 (1978): 23-36.
407. Green, "Stopping Embryo Research"; Shannon H. Smith, "Ignorance Is Not Bliss: Why a Ban on Human Cloning Is Unacceptable," Health Matrix: Journal of Law-Medicine 9 (1999): 311-34.
408. Nikki Melina Constantine Bell, "Regulating Transfer and Use of Fetal Tissue in Transplantation Procedures:The Ethical Dimensions," American Journal of Law & Medicine 20 (1994): 277-94.
409. David B. Resnik, "Privatized Biomedical Research, Public Fears, and the Hazards of Government Regulation: Lessons from Stem Cell Research," Health Care Analysis 7 (1999): 273-87.
410. Thomas I. Emerson, "The Constitution and Regulation of Research," in Regulation of Scientific Inquiry, Societal Concerns with Research, ed. Keith M. Wulff (Boulder, Colo.:Westview Press, 1979), 129.
411. John A. Robertson, "The Scientists' Right to Research: A Constitutional Analysis," Southern California Law Review 51 (1978): 1203.
412. David Baltimore, "Limiting Science: A Biologist's Perspective," Daedalus 107 (1978): 37-46.
413. Sinsheimer, "Presumptions of Science.".
414. Pollack, Missing Moment, 177.
415. Hakan Widner, "The Case for Neural Tissue Transplantation as a Treatment for Parkinson's Disease," in Parkinson's Disease: Advances in Neurology, ed. Gerald M. Stern (Philadelphia: Lippincott Williams and Wilkins, 1999), 641-49.
416. Kenneth A. Follett, "The Surgical Treatment of Parkinson's Disease," in Annual Review of Medicine, ed. Cecil H. Coggins (Palo Alto, Calif.: Annual Reviews, 2000), 135-46.
417. "News," Science 287 (2000): 1672.
418. Green, "Stopping Embryo Research.".
419. Elizabeth Heitman, "Infertility as a Public Health Problem: Why Assisted Reproductive Technologies Are Not the Answer," Stanford Law and Policy Review 6 (1995): 89-102.
420. National Bioethics Advisory Commission, Human Stem Cell Research, ii, 53, 58.
421. David A. Prentice, "No Fountain of Youth," Regeneration 6 (2000): 16.
422. "Study: Fat May Be Stem Cells Source," New York Times, 10 April 2001, A-15.
423. Sylvia Pagan Westohal, "Beating the Ban: Will Embryonic Stem Cells Made without Embryos Keep Politicians Happy?" New Scientist 172 (2001): 5-6.
424. Audrey R. Chapman, Mark S. Frankel, and Michele S. Garfinkle, Stem Cell Research and Applications: Monitoring the Frontiers of Biomedical Research (Washington, D.C.: American Association for the Advancement of Science, 1999), x.
425. Glenn McGee and Arthur L. Caplan, "What's in the Dish?" Hastings Center Report 29, no. 2 (1999): 36-38.
426. Green, "Stopping Embryo Research," 252.
427. Ronald M. Green, The Human Embryo Research Debates (New York: Oxford University Press, 2001), 165-75.
428. Martha Nussbaum, Women and Human Development:The Capabilities Approach (New York: Cambridge University Press, 2000), 179-80.
429. John Rawls, The Law of Peoples (Cambridge,Mass.: Harvard University Press, 1999), 131, 133.
430. Amy Gutmann and Dennis Thompson, Democracy and Disagreement (Cambridge, Mass: Belknap Press of Harvard University, 1996), 55-63.
431. Louis Menand, "Civil Actions: Brown v. Board of Education and the Limits of the Law," New Yorker, 12 February 2001, 96.
432. Robert Audi and Nicolas Wolterstorff, Religion in the Public Square (Lanham, Md.: Rowman and Littlefield, 1997).
433. Jonathan Moreno, Deciding Together: Bioethics and the Moral Consensus (New York: Oxford University Press, 1995), 85.
434. "Pfizer-Life Is Our Life's Work," International Herald Tribune, 8 December 2000, 6.
435. William Rothstein, "Pharmaceuticals and Public Policy in America: A History," in Readings in American Health Care, ed. William Rothstein (Madison: University of Wisconsin Press, 1995).
436. Jorgen Drews, "Drug Discovery: A Historical Perspective," Science 287 (2000): 1960-64.
437. Louis Glambos and Jeffrey L. Sturchio, "The Pharmaceutical Industry in the Twentieth Century: A Reappraisal of the Sources of Innovation," History and Technology 13 (1996): 83-100.
438. Marcia Angell, "The Pharmaceutical Industry-to Whom Is It Accountable?" New England Journal of Medicine 342 (2000): 1902-4.
439. Pharmaceutical Research and Manufacturers of America, PhRMA Annual Report 2000-2001 (Washington, D.C., 2000), 1.
440. IMS Health, "IMS Health Reports 10 Percent Growth in 2000 Audited Global Total Pharmaceutical Sales to $317.2 Billion" (www.imshealth.com: IMS Health, 2001).
441. Ernst and Young, The Economic Contributions of the Biotechnology Industry to the U.S. Economy (Washington, D.C.: Biotechnology Industry Organization, 2000).
442. Bruce Agnew, "When PhRMA Merges, R & D Is the Dowry," Science 287 (2000): 1953.
443. "Horn of Plenty," The Economist, 21 February 1998, S-5.
444. Pharmaceutical Research and Manufacturers of America, Pharmaceutical Industry Profile (Washington, D.C., 2000).
445. Ann-Marie MacIntyre, Key Issues in the Pharmaceutical Industry (New York: John Wiley and Sons, 1999), 92 ff.
446. Ian Cockburn and Rebecca Henderson, "Public-Private Interaction in Pharmaceutical Research," Proceedings of the National Academy of Sciences 93 (1996): 12726.
447. Jeff Gerth and Sheryl Gay Stolberg, "Drug Makers Reap Profits on Tax-Backed Research," New York Times, 23 April 2000, A-1.
448. Jeff Gerth and Sheryl Gay Stolberg, "How Companies Stall Generics and Keep Themselves Healthy," New York Times, 23 July 2000, A-1.
449. "Changing Marketplace 2000" (2000).
450. Shailagh Murray, "Drug Companies Are Spending Record Amounts on Lobbying and Campaign Contributions" Wall Street Journal, 7 July 2000, A-14.
451. Fred Charatan, "Drug Companies Help Pay for Bush Inauguration," British Medical Journal 322 (2001): 192.
452. Ernst R. Berndt, "The U.S. Pharmaceutical Industry: Why Major Growth in Times of Cost Containment?" Health Affairs 20, no. 2 (2001): 100-114.
453. Pharmaceutical Research, Pharmaceutical Industry Profile, 75.
454. Office of Technology Assessment, U.S. Congress, Pharmaceutical R&D: Costs, Risks and Rewards, OTA-H-522 (Washington, D.C.: Government Printing Office, 1993), 54-67.
455. Ann-Marie MacIntyre, Key Issues in the Pharmaceutical Industry (New York: John Wiley and Sons, 1999), 83.
456. Stephen Hall, "Prescription for Profit," New York Times Magazine, 11 March 2001, 59.
457. Gerth and Stolberg, "How Companies Stall Generics.".
458. Pharmaceutical Research and Manufacturers of America, 1998 Industry Profile (Washington, D.C., 1999), 17.
459. Patricia Van Arnum, "Active Pharmaceutical Ingredients: The Opportunities in the Branded Prescription Market," Chemical Market Reporter 258 (2000): 14.
460. Rachel Zimmerman, "Drug Spending Soared 17.4% during 1999,"Wall Street Journal, 27 June 2000, A-3.
461. Sheryl Gay Stolberg, "No Simple Answer to Rising Costs of Drugs for the Elderly," New York Times, 3 September 2000, A-26.
462. Henry J. Kaiser Family Foundation, "Understanding the Effects of Direct-to-Consumer Prescription Drug Advertising" (Menlo Park, Calif., 2001).
463. Baruch Brody, Ethical Issues in Drug Testing, Approval, and Pricing (New York: Oxford University Press, 1995), 229.
464. Robert Goldburg, "Bountiful Bogeyman: The Drug Companies-So Easy to Defend," National Review, 25 September 2000; and James Surowiecki, "Big Pharma's Drug Problem," New Yorker, 16 October 2000, 98.
465. MacIntyre, Key Issues in the Pharmaceutical Industry, 129-32.
466. Hall, "Prescription for Profit," 100.
467. Angell, "Pharmaceutical Industry-to Whom Is It Accountable?" 1902.
468. Pharmaceutical Research, Pharmaceutical Industry Profile, 2000; Dan Baker, "The Real Drug Crisis," In These Times, 25 July 1999.
469. Michael A. Heller and Rebecca S. Eisenberg,"Can Patents Deter Innovation? The Anticommons in Biomedical Research," Science 280 (1998): 698-701.
470. Laurie McGinley, "Patent Laws Are Questioned in Drug Study," Wall Street Journal, 24 July 2000, A-3.
471. John E. Calfee, Prices, Markets, and the Pharmaceutical Revolution (Washington, D.C.: AEI Press, 2000), 33.
472. Patricia Danzon, "Making Sense of Drug Prices," Regulation 23 (2000): 61.
473. Geeta Anand, "Immunex Races to Meet Demand for Biotech Drug," Wall Street Journal, 20 February 2001, B-1.
474. Congressional Budget Office, How Increased Competition from Generic Drugs Has Affected Prices and Returns in the Pharmaceutical Industry (Washington, D.C.: Government Printing Office, 1998).
475. MacIntyre, Key Issues in 1the Pharmaceutical Industry, 129-34.
476. Uwe E. Reinhardt, "Perspectives on the Pharmaceutical Industry," Health Affairs 20, no. 5 (2001): 136-49.
477. MacIntyre, Key Issues in the Pharmaceutical Industry, 138.
478. Richard G. Frank, "Prescription Drug Prices: Why Do Some Pay More Than Others Do?" Health Affairs 20, no. 2 (2001): 115-28.
479. Lynn Etheredge, "Purchasing Medicare Prescription Drug Benefits: A New Proposal," Health Affairs 18 (1999): 7-19.
480. John A. Poisal and Lauren Murray, "Growing Differences between Medicare Beneficiaries with and without Drug Coverage," Health Affairs 20, no. 2 (2001): 74-85.
481. Shailagh Murray and Lucette Lagnado, "Drug Companies Face Assault on Prices," Wall Street Journal, 11 May 2000, B-1; and Bruce Stuart, Dennis Shea, and Becky Briesacher, "Dynamics in Drug Coverage of Medicare Beneficiaries: Finders, Losers, Switchers," Health Affairs 20 (2001): 86-99.
482. John K. Iglehart, "Medicare and Prescription Drugs," New England Journal of Medicine 344 (2001): 1010-15.
483. Sheryl Gay Stolberg, "Africa's AIDS War," New York Times, 10 March 2001, A-1.
484. Helen Cooper, Rachel Zimmerman, and Laura McGinley, "Patent Pending: AIDS Epidemic Traps Drug Firms in a Vise: Treatments vs. Profits," Wall Street Journal, 2 March 2001, A-1.
485. MacIntyre, Key Issues in the Pharmaceutical Industry, 177, 179.
486. David B. Resnik, "Developing Drugs for the Developing World: An Economic, Legal, Moral and Political Dilemma," Developing World Bioethics 1 (2001): 13-22.
487. MacIntyre, Key Issues in the Pharmaceutical Industry, 183.
488. Donald G. McNeil Jr., "Drug Makers and Third World: Study in Neglect," New York Times, 21 May 2000, A-1.
489. Meredith Turshen, "Reprivatizing Pharmaceutical Supplies in Africa," Journal of Public Health Policy 22 (2001): 198-224.
490. David Noble, America by Design: Science, Technology, and the Rise of Corporate Capitalism (New York: Knopf, 1977), 130-31.
491. Ezekiel J. Emanuel and Daniel Steiner, "Institutional Conflict of Interest," New England Journal of Medicine 32 (1995): 262-67.
492. David Blumenthal and E. G. Campbell, "Academic Industry Relationships in Biotechnology: A Primer on Policy and Practice," Cloning 2 (2000): 129-36.
493. Eyal Press and Jennifer Washburn, "The Kept University," Atlantic Monthly, 1 March 2000, 39-40.
494. Blumenthal and Campbell, "Academic Industry Relationships.".
495. "Zero Tolerance Financial Interest Policies Urged by Former NEJM Editor," Blue Sheet, 23 August 2000, 5.
496. Hamilton Moses III and Joseph B. Martin, "Academic Relationships with Industry," Journal of the American Medical Association 285 (2001): 933-35.
497. National Institutes of Health, NIH Data Book (Bethesda, Md., 1990); see also Peter J. Neuman and Eileen A. Sandberg, "Trends in Health Care R&D and Technology Innovation," Health Affairs 17, no. 6 (1998): 111-19.
498. Pharmaceutical Research, Pharmaceutical Industry Profile, 2000.
499. C. Daniel Mullins, Francis Palumbo, and Bruce Stuart, "The Impact of Pipeline Drugs on Pharmaceutical Spending" (presented at a joint BlueCross BlueShield/Health Insurance Association of America Symposium, 13-14 April 2001, University of Maryland School of Pharmacy [available at www.hiaa.org]).
500. Health Insurance Association of America, The Impact of Medical Technology on Future Health Care Costs (Bethesda, 2001); and Health Insurance Association of America, "Press Release:Technology May Account for a Third of Projected Health Spending Increases" (2001; both are available at www.hiaa.org).
501. David M. Cutler, Technology, Health Costs, and the NIH (Cambridge, Mass.: Harvard University Press, 1995).
502. Hall, "Prescription for Profit," 45.
503. National Institutes of Health, A Periodic Evaluation of the Cost-Benefits of Biomedical Research (Bethesda, 1992).
504. Pharmaceutical Research, PhRMA Annual Report 2000-2001 and Pharmaceutical Industry Profile, ch. 4.
505. Battelle's Medical Technology Assessment and Policy Research Center, The Value of Pharmaceuticals: An Assessment of Future Costs for Selected Conditions (Washington, D.C., 1990).
506. Funding First: Mary Woodard Lasker Charitable Trust, Exceptional Returns: The Economic Value of America's Investment in Medical Research (New York: Lasker Foundation, 2000).
507. Herbert Pardes et al., "Effects of Medical Research on Health Care and the Economy," Science 283 (1999): 36.
508. Kenneth G. Manton, Larry S. Corder, and Eric Stallard, "Monitoring Changes in the Health of the U.S. Elderly Population: Correlates with Biomedical Research and Clinical Innovation," FASEB Journal 11 (1997): 923-24.
509. Funding First, Exceptional Returns.
510. David M Cutler, Mark B. McClellan, and Joseph P. Newhouse, "The Costs and Benefits of Intensive Treatment for Cardiovascular Disease," in Measuring the Prices of Medical Treatments, ed. Jack E. Triplett (Washington, D.C.: Brookings Institution Press, 1999), 34-71.
511. Frank R. Lichtenberg, "Do (More and Better) Drugs Keep People Out of Hospitals?" American Economic Review 86 (1996): 387.
512. Albert A. Okunade and Vasudera N. R. Murthy,"Technology as a 'Major Driver' of Health Care Costs: A Cointegration Analysis of the Newhouse Conjecture," Journal of Health Economics 2 (2002): 147-59.
513. Manton et al., "Monitoring Changes in the Health," 928.
514. Funding First, Exceptional Returns, 7; see also Frank R. Lichtenberg, "The Allocation of Publicly Funded Biomedical Research," in Medical Care Output and Productivity, ed. David M. Cutler and Ernst R. Bendt (Chicago: University of Chicago Press, 2001).
515. Selma J. Mushkin, Biomedical Research: Costs and Benefits (Cambridge, Mass.: Ballinger Publishing, 1979), 9.
516. Cutler et al., "Costs and Benefits of Intensive Treatment," 69.
517. Funding First, Exceptional Returns, 1.
518. Kevin M. Murphy and Robert Topel, "The Economic Value of Medical Research" (manuscript, 1999).
519. J. D. Kleinke, while conceding that many better medicines can and do increase costs, argues that the increases are not as important as they are made out to be, and that there are possible reforms that could reduce them ("The Price of Progress: Prescription Drugs in the Health Care Market," Health Affairs 20, no. 5 [2001]: 47-59).
520. Frank R. Lichtenberg, "Are the Benefits of Newer Drugs Worth Their Cost? Evidence from the 1996 MEPS," Health Affairs 20, no. 5 (2001): 241-51.
521. David M. Cutler and Mark McClellan, "Is Technological Change in Medicine Worth It?" Health Affairs 20 (2001): 11-29.
522. Catherine Hoffman, Dorothy Rice, and Hai-Yen Sung, "Persons with Chronic Conditions: Their Prevalence and Costs," Journal of the American Medical Association 276 (1996): 1473-79.
523. American Heart Association, 2001 Heart and Stroke Statistical Update (Dallas, 2000), 1; idem, 1998 Heart and Stroke Statistical Update (Dallas, 1997), 10.
524. Murphy and Topel, "The Economic Value of Medical Research.".
525. I am indebted to Stuart O. Schweitzer for pointing this out to me; see also Jean Martin, "Research in Biomedicine: Is Anyone Representing/ Advocating the Public Interest?" European Journal of Public Health 11 (2000): 459.
526. "Health Economics and Improved Utilisation of Drugs," IHE Information (Sweden) (April 2001): 1-30.
527. Robert J. Blendon et al., "Americans' Health Priorities: Curing Cancer and Controlling Costs," Health Affairs 20, no. 6 (November-December 2001): 222-32.
528. Richard H. Shryock, American Medical Research Past and Present (New York: Commonwealth Fund, 1947), 44.
529. Stephen P. Strickland, Politics, Science, and Dread Disease (Cambridge, Mass.: Harvard University Press, 1972), 35.
530. Elizabeth Brenner Drew, "The Health Syndicate: Washington's Noble Conspirators," Atlantic Monthly, December 1967, 76.
531. Senator Arlen Specter, 24 March 1998, in remarks before the U.S. Senate Subcommittee on Labor, Health, and Human Services, and Education and Related Agencies, Committee on Appropriations,Washington, D.C.
532. Judith Havemann, "Crusading for Cash: Patient Groups Compete for Bigger Shares of NIH's Research Funding," Washington Post, 15 December 1998, sec. Health, Z10.
533. Rebecca Dresser, "Public Advocacy and Allocation of Federal Funds for Biomedical Research," Milbank Quarterly 77 (1999): 257-74.
534. Rebecca Dresser, When Science Offers Salvation: Patient Advocacy and Research Ethics (New York: Oxford University Press, 2001), 159-65.
535. Dresser, "Public Advocacy and Allocation"; and David B. Resnik, "Setting Biomedical Research Priorities," Kennedy Institute of Ethics Journal 11 (2000): 181-204. Resnik usefully notes drawbacks to a greater lay role.
536. Floyd E. Bloom, "Priority Setting: Quixotic or Essential?" Science 282 (1998): 1641.
537. Chris Ham and Louise Locock, "International Approaches to Priority Setting in Health Care," Health Services Management Center, Handbook Series 25 (Birmingham, England: University of Birmingham, 1998).
538. Chris Ham, "Priority Setting in Health Care: Learning from International Experience," Health Policy 42 (1997): 49.
539. Paul Belcher and Elias Mossialos, "Health Priorities for the European Intergovernmental Conference," British Medical Journal 314 (1997): 1637.
540. Commission on Health Service Research for Development, Health Research: Essential Link to Equity in Development (New York: Oxford University Press, 1990).
541. Dean T. Jamison et al., Disease Control Priorities in Developing Countries (New York: Oxford University Press,1993).
542. Report of the Ad Hoc Committee on Health Research Relating to Future Intervention Options, Investing in Health Research and Development (Geneva: World Health Organization, 1996, Document TDR/Gen/96.1); see also Christopher J. L. Murray, "Rational Approaches to Priority Setting in International Health," Journal of Tropical Medicine and Hygiene 93 (1990): 303-11.
543. Roger Jones, Tara Lamont, Andrew Haines, "Setting Priorities for Research and Development in the NHS: A Case Study on the Interface between Primary and Secondary Care," British Medical Journal 311 (1995): 1076.
544. Public Statements of the State, The Difficult Choices of the Health Service: White Paper on Priority-Setting (Stockholm: Social Department, 1995); and D. F. Norheim, Priority-Setting in the Health Service (Oslo: Center for Medisinsk, 1993).
545. Danish Council of Ethics, Priority Setting in the Health Service (Copenhagen: Danish Council of Ethics, 1997).
546. Thomas Bodenheimer, "The Oregon Health Plan: Lessons for the Nation," first of two parts, New England Journal of Medicine 337 (1997): 651.
547. Carey P. Gross, Gerald F. Anderson, and Neil R. Rowe, "The Relation between Funding by the National Institutes of Health and the Burden of Disease," New England Journal of Medicine 340 (1999): 1881.
548. Cayn Donaldson and Gavin Mooney, "Needs Assessment, Priority Setting, and Contracts for Health Care: An Economic View," British Medical Journal 303 (1991): 1529.
549. Richard H. Morrow and John H. Bryant, "Health Policy Approaches to Measuring and Valuing Human Life: Conceptual and Ethical Issues," American Journal of Public Health 85 (1995): 1356.
550. Selma J. Mushkin and J. Steven Landefeld, Biomedical Research: Costs and Benefits (Cambridge, Mass.: Ballinger, 1979).
551. John Harris, "QALYfying the Value of Life," Journal of Medical Ethics 13 (1987): 117.
552. Jeff Richardson and Erik Nord, "The Importance of Perspective in the Measurement of Quality-Adjusted Life Years," Medical Decision Making 17 (1997): 33.
553. Christopher J. L. Murray and Arnab K. Achyara, "Understanding DALYs," Journal of Health Economics 16 (1997): 703-30.
554. Jennifer Dixon and H. G. Welch, "Priority-Setting: Lessons from Oregon," Lancet 337 (1991): 891-94.
555. Eliot Marshall, "Lobbyists Seek to Reslice NIH's Pie," Science 276 (1997): 276.
556. NIH Working Group on Priority Setting, "Setting Research Priorities at the National Institutes of Health," no. 97-4265 (Bethesda, 1998).
557. I use the list presented in a study carried out by the Institute of Medicine and discussed below; because the institute developed it from documents and testimony it received, the list is thus more precise than that presented in the white paper.
558. Gross et al., "Relation between Funding," 693-98.
559. Office of the Director, "Disease-specific Estimates of Direct and Indirect Costs of Illness and NIH Support" (Bethesda: NIH, 1997).
560. Bruce Agnew, "NIH Embraces Citizens, Council to Cool Debate on Priorities," Science 282 (1998): 18.
561. Dresser, "Public Advocacy and Allocation.".
562. Tammy O. Tengs, Planning for Serendipity: A New Strategy to Prosper from Health Research (Washington, D.C.: Progressive Policy Institute, 1998).
563. C. Mitcham and R. Frodeman, "The Plea for Balance in the Public Funding of Science," Technology in Society 24 (2002): 83-92.
564. Remarks of John Porter at White House Office of Science and Technology Policy's 25th anniversary symposium, Massachusetts Institute of Technology, Cambridge,Mass., 1 May 2001.
565. David Malakoff, "War Effort Shapes U.S. Budget, with Some Program Casualties," Science 295 (2002): 952-54.
566. Afschin Gandjour, "Is Subjective Well-Being a Useful Parameter for Allocating Resources among Public Interventions?" Health Care Analysis 9 (2001): 437-47.
567. E. Diener et al., "Subjective Well Being: Three Decades of Progress," Psychological Bulletin 125 (1999): 276-302.
568. Associated Press,"World Health Organization Report:U.S. Spends Most on Health; France No. 1 in Treatment," CNN.com (20 June 2000).
569. Gerard F. Anderson and Peter Sotir Hussey, "Comparing Health System Performance in OECD Countries,"Health Affairs 20, no. 3 (2001): 219-32.
570. National Center for Health Statistics, "10 Leading Causes of Death by Age Group-1998" (Bethesda, 2000).
571. Alastair J. S. Wood, "When Increased Therapeutic Benefit Comes at Increased Cost," New England Journal of Medicine 346 (2 June 2002): 1819-21.
572. Katharine Levit et al., "Inflation Spurs Health Spending in 2000," Health Affairs 21 (January-February 2002): 172-81.
573. Harold Varmus, NIH Record 52, no. 2, 25 January 2000.
574. C. Christensen, R. Bohmer, and J. Kenagy, "Will Disruptive Innovations Cure Health Care?" Harvard Business Review (2000): 103.
575. Dinah Kim, Robert J. Blendon, and John M. Benson, "How Interested Are Americans in New Medical Technologies? A Multicountry Comparison," Health Affairs 20, no. 3 (2001): 194-201.
576. J. D. Kleinke, Oxymorons: The Myth of a U.S. Health Care System (San Francisco: Jossey-Bass, 2001), 90.
577. David Leonhardt, "Health Care as Main Engine: Is That So Bad?" New York Times, 11 November 2001, C-1, 12.
578. Siddharta Mukherjee,"Fighting Chance:The Case for Funding Curiosity," New Republic, 21 January 2002, 16-19.
579. A. L. Cochrane, Effectiveness and Efficiency (Abingdon, England: Nuffield Provincial Hospitals Trust, 1972), 86.
580. J. Michael McGinnis, Pamela William-Russo, and James R. Knickman, "The Case for More Active Attention to Health Promotion," Health Affairs 21, no. 2 (2002).