Index

A

Abortion, 47, 172

as bioethics topic, 187-188

fetal research and, 97, 98, 138, 173, 481, 482-483, 484, 496-497nn.37-38

French debate, 488

grassroots movements, 8, 138-139

legal environment, 106, 107, 341-342, 344

in National Commission deliberations, 267

political conflicts over, 94, 353, 477-478

women's movement and, 50, 52

Abram, Morris B., 246-247, 269

Academic-industry collaboration, 2, 3, 27, 39-41

benefits of, 60-61

ELSI Working Group on, 441-442

Access to care, 3, 359

antipoverty programs and, 48

hospital resources and, 37

insurance trends in, 37-38, 57

new medical technology and, 38-39

President's Commission on, 92, 93, 101, 102, 162, 266, 289

social justice issues in, 247-248, 350

Accountability in health care, 35-36

in policymaking, 337

of science, 79-80

in science research, 62

Accreditation, 7, 125, 181, 412-413

ACT-UP. See AIDS Coalition to Unleash Power

Action-forcing power of national commissions, 91, 101, 174, 191

of supra-agency ethics commission, 21-22, 191

Adams, Arlin, 482

Advance directives, 100, 105, 163, 309, 313, 317, 318, 322, 324, 412

legal conceptualizations, 343

Advisory Committee on Human Radiation Experiments, 33-34

African Americans, 48-49, 139-140, 141, 156

Agency for Health Care Policy and Research, 120-121



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Society's Choices: Social and Ethical Decision Making in Biomedicine Index A Abortion, 47, 172 as bioethics topic, 187-188 fetal research and, 97, 98, 138, 173, 481, 482-483, 484, 496-497nn.37-38 French debate, 488 grassroots movements, 8, 138-139 legal environment, 106, 107, 341-342, 344 in National Commission deliberations, 267 political conflicts over, 94, 353, 477-478 women's movement and, 50, 52 Abram, Morris B., 246-247, 269 Academic-industry collaboration, 2, 3, 27, 39-41 benefits of, 60-61 ELSI Working Group on, 441-442 Access to care, 3, 359 antipoverty programs and, 48 hospital resources and, 37 insurance trends in, 37-38, 57 new medical technology and, 38-39 President's Commission on, 92, 93, 101, 102, 162, 266, 289 social justice issues in, 247-248, 350 Accountability in health care, 35-36 in policymaking, 337 of science, 79-80 in science research, 62 Accreditation, 7, 125, 181, 412-413 ACT-UP. See AIDS Coalition to Unleash Power Action-forcing power of national commissions, 91, 101, 174, 191 of supra-agency ethics commission, 21-22, 191 Adams, Arlin, 482 Advance directives, 100, 105, 163, 309, 313, 317, 318, 322, 324, 412 legal conceptualizations, 343 Advisory Committee on Human Radiation Experiments, 33-34 African Americans, 48-49, 139-140, 141, 156 Agency for Health Care Policy and Research, 120-121

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Society's Choices: Social and Ethical Decision Making in Biomedicine AIDS Coalition to Unleash Power (ACT-UP), 8, 53, 137, 138, 469, 471 AIDS/HIV, 96, 119 antidiscrimination legislation, 349, 350 confidentiality in autopsy reports, 117 confidentiality in research, 459-463 ethical issues in, 168, 458 ethicist-activist collaborations, 475 gay and lesbian concerns, 52-53 grassroots organizations, 137-138 hospital utilization and, 56 in minority populations, 49 new drug research, 470-472 policy conflicts in, 459 political context of policymaking in, 352, 458-459, 474-475 public health classification, 336-337 research funding, 52-53, 352 research protocols, 468-472 screening for, 463-466, 491 testing pregnant women and newborns, 467-468 tuberculosis and, 472-474 women's issues, 51, 467-468 American Academy of Pediatrics, 7, 119, 411 American Association of Bioethics, 120 American Association of Colleges of Nursing, 82 American College of Obstetricians and Gynecologists, 7, 118, 120, 180, 485 American College of Physicians, 7, 119 American Council of Life Insurance, 451 American Dental Association, 82 American Fertility Society, 118, 180, 485 American Foundation for AIDS Research, 470 American Hospital Association, 36, 411, 412 American Medical Association, 7, 69, 117-118, 120, 348, 411, 419, 484 American Thoracic Society, 7, 119 Americans with Disabilities Act, 348-350, 352 ELSI and, 442, 447, 452 Antibiotics, 15, 170 tuberculosis resistance, 472 Argentina, 110 Arizona, 480 Arkansas, 313 Armstrong, John A., 61 Arras, John, 247 Artificial insemination, 499n.59 Asilomar conference, 78, 95, 435 Assisted suicide, 36, 119, 184, 317-318, 319-320 state regulation of, 18-19 vs. refusal of treatment, 309, 315 Association of American Medical Colleges (AAMC), 81, 83 Association of State and Territorial Health Officials, 464-465 Augenstein, Leroy, 69 Australia, 109, 110 B Baby Doe issues, 102, 119, 121, 318-319, 411 Baby Mcase, 100 Barnes, Barry, 394-395 Bauer, Gary, 481, 482 Bayer, Ronald, 247 Bayh-Dole Patent and Trademark Laws Amendment Act, 59 Beckwith, Jonathan, 438-439 Beecher, Henry, 32 Beneficence, 91 Bentham, Jeremy, 206 Bernard, Claude, 30 Bernard, Jean, 491, 492 Beta-thalassemia, 140 Bioethics academic development, 67-70 centers for study of, 8, 69, 131-133 complexity of moral decision making in, 252 conceptual evolution, 4, 176 core issues, 358, 359 current deliberations, 73, 168 as government domain, 5-6 multidisciplinary investigations, 74- 75 as philosophic discipline, 70-73

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Society's Choices: Social and Ethical Decision Making in Biomedicine professional forums for consideration of, 7-8 professional practitioners, 68, 423 in public discourse, 68, 72-73 scientists in, 5, 75-80 Biomedical Ethics Advisory Committee, 6, 437 expiration, 94, 187, 305n.1, 454n., 477 mandate, 94, 436, 454n.1, 477 membership, 94, 454n.1, 514-515 origins of, 436 political context, 94, 103, 187 Biomedical Ethics Board, 93-94, 172, 436 Biotechnology Industry Association, 59 Birth control pills, 51 Blackmun, Harry, 340-341 Bleich, J. David, 324, 328, 483 Blood transfusions, 359 religious objection to, 248 Bouvia v. Supreme Court, 342, 425 Boyle, Robert, 397, 398 Breast cancer, 51 British Medical Association, 113 Brody, Baruch, 247-248 Brooklyn Jewish Chronic Disease Hospital, 32 Bush administration, 348, 352, 445, 477, 483, 485 Bypass surgery, 15, 170 C Califano,Joseph, 94, 95 California, 313, 314, 480 Natural Death Act, 105, 313 Calvin, John, 370 Canada, 110, 115, 428n.3, 485-486 Cancer, 480 research, 63, 96 Canterbury v. Spence,34 Capron, Alexander, 269 Cardiopulmonary resuscitation, 324-325 Carter administration, 135, 269, 300, 306n.4 Centers for Disease Control, 94 in AIDS/HIV research, 459, 460, 461, 467 Changeux, Pierre, 491-492 Civil rights movement, 4, 48 Clinical practice guidelines, 116 artificial nutrition and hydration, 121-122 problems of, 120-121 for seriously ill newborns, 121, 411 Clinton administration, 8, 27, 33-34, 58, 62, 157, 173, 353, 485 Cloning, 14-15 Closed meetings, 11-12, 156-159, 171, 299 in hospital ethics committee deliberations, 416 Cobbs v. Grant,34 Comité Consultatif National d'Éthique pour la Santé et les Sciences de la Vie (CCNE) , 478-479, 486-493 Commercialization, 3, 440 See also Academic-industry collaboration Commission on the Cost of Medical Care (1930), 263 Commissions on bioethics bureaucratic location, 114, 299 commitment of participants in, 303-304 complete consensus in, 242-243 composition, 256 compromise in, 161, 244-245 congressional, 6, 90-94 consensus-building in, as evaluation criterion, 13, 160-162, 257-258 contextual assessment of, 331-332 contributions of , x, 297-299 credibility of, 479-480 decision by majority rule in, 245-246 decision-making methods, vs. moral philosophy methods, 217-218, 223 , 239 deductivism in moral reasoning of, 224-226 democratic values in, 11-12, 77, 155- 159 design as performance factor in, 299 dissemination of findings, 159-160

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Society's Choices: Social and Ethical Decision Making in Biomedicine effectiveness of, 12-13, 103, 159-164, 297-299 elitist model, 112 ethical-political scope of, 217-222, 234-235 evolution of, viii-ix explicit moral systems in, 234-235 in federal agencies, 19, 94-99 in France, 478-479, 486-493 goals of, 216-217, 332 growth of mandate and effectiveness of, 285 ideological conflict in, 293, 299 implementation of recommendations, 305 institutional settings, 7 as instrument of consensus, 217 intellectual integrity in, 9-11, 77, 153-155 international comparison, 6, 107-115 , 492-493 leadership, 299 methodology, 165-166 moral reasoning in, 215 national, role of, 103, 115, 178 open vs. closed meetings, 156-159, 171,299, 416 overlapping consensus in, 243-244 policy/practice impact, 304-305 in policymaking, 1-2, 216-217 populist model, 110-112 potential negative outcomes of, 14, 164-167 prestige factors, 305n.3 private model, 112-113 problems of process, 256-257 professional dominance of, 114 professional ethicists in, 222-223 in professional scientific societies, 7-8 public access, 114 public education role, 111, 217 report-writing style, 12, 159 role of, 261 role of consensus in, 252-253 single-interest advocacy in, 14, 164-165, 475 sponsorship, 114, 299 staff structure, 115, 302-303, 306n.6 state-sponsored, 6, 19, 99-100, 184-185 supra-agency national organization, 15-16, 19-23 trade-offs in design/activities of, 301 See also Evaluation of commissions; Mechanisms of ethical decision making; Membership of commissions; specific commission Community-based organizations, 8-9, 137, 139-141, 143-144 Compromise, 161, 232, 244-245, 258n.4, 475 See also Consensus Confidentiality, 97 AIDS/HIV and, 458, 459-463, 464, 465, 466 American Medical Association on, 117 in genetic research, 440, 450, 451 in hospital ethics committee deliberations, 416 in human subjects research, 123 legal basis of medical privacy, 341, 342 National Commission on, 284 President's Commission on, 92, 93, 266 supra-agency commission on, 186 Congress, U.S. bioethics advisory boards, 6 ELSI Working Group and, 445-447 legislative authority, 345-346 Office of Technology Assessment, 130, 346-347 political functioning, 45-46 in regulation of scientific research, 33, 40, 62, 78, 90-94 supra-agency national commission and, 189, 190 Conroy case, 99, 122 Consensus, 13, 102, 151 in AIDS/HIV research design, 470-471 in bioethics commissions, 252-253, 257-258 closed meetings and, 157-159 complete form, 242-243

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Society's Choices: Social and Ethical Decision Making in Biomedicine composition of deliberating body and, 256 compromise and, 244-245, 258n.4 in construction of moral belief, 202, 203, 211-212, 217, 237-238 in design of resource allocation guidelines, 254-255 diversity of views in, 332 as evaluation criterion for bioethics bodies, 13, 160-162, 257-258 forms of, 242 groupthink in, 256-257 investigative process as obstacle to, 77 legislative process and, 350 majority rule and, 245-246 meaning of, 241, 257 moral pluralism and, 249-251 multitiered decision-making system for, 177-178 normative value of, 248-249 overlapping form, 237-238, 243-244 problems of, 256-257 process, 29 as role of ethics commissions, 217 in state-level forums, 184-185 strategic role of, 246-248 value of, 253-254 Consumer groups, health care, 3, 4, 36, 53-54, 136 Contraception, 50, 51, 79, 106, 156, 339 legal environment, 341, 342 private research, 138-139 Contractualist philosophy, 207, 259n.7 Cooperative Research and Development Agreements, 40, 59 Cost of care, 4, 56, 359 distribution of spending, 58 ethical debate and, 164 hospital ethics committees and, 426-427 hospital management trends, 37 trends, 350 Cost-shifting, 37 Council for International Organizations of Medical Science, 108 Council of Europe, 108-109 Criminal justice system, 97 genetic research in, 440 Cruzan v. Director, Missouri Department of Health, 105, 122, 343, 412 Cystic fibrosis, 131, 140, 289, 435 ELSI program, 447-449 D Dalkon Shield, 51 Daubert v. Merrell Dow Pharmaceuticals, 76, 80, 340 Death, definition of, 79, 322 moral values in, 372, 373 President's Commission on, 92, 93, 101, 151-152, 164, 216, 266, 286, 306n.12 public education on, 111 state ethics commissions on, 6, 99, 100, 105, 184, 185, 322 Declaration of Helsinki, 31 Deductive reasoning, in moral justification, 223-226, 229, 231, 232 Deinstitutionalization, 343-344 Democratic process American tradition, 43-44, 335-336 in bioethics forums, 11-12, 77, 155-159 citizen participation in health care decisions, 143-144 ethical pluralism in, 238 legislative process, 345-346 moral legitimacy in, 212 moral pluralism in, 251 policymaking in, 45-46 religious activism in, 364 scientific process and, 76 Denmark, 110-112, 163 DES. See Diethylstilbestrol Diabetes, 480 Dialysis, vii, 37, 39 Dideoxyinosine, 53 Diethylstilbestrol, 51 Dinnerstein, In re, 314, 316 Disease screening HIV, 459, 463-466, 467-468 sickle cell anemia, 49 state responsibility, 19, 184 tuberculosis, 473-474 Do not resuscitate orders, 99, 163-164, 323-325, 328-330

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Society's Choices: Social and Ethical Decision Making in Biomedicine Documentation for do not resuscitate orders, 325, 329 of hospital ethics committee proceedings, 417, 419 Down's Syndrome, 319, 409 Drug testing, 112 Duty to care, 426 as HIV issue, 458 E Economic issues abortion funding, 106, 341 academic-commercial relationships, 3 AIDS research funding, 52-53 biomedical research funding, 39-40 biomedical research spending, 58 biotechnology industry, 59 funding for bioethical investigations, 16 government funded research, 58-59, 62 government funding of social impact research, 97 government health insurance, 54-55 health care financing, 2, 37-38 health care industry, 58 health care spending, 350 in hospital ethics committees, 426-427 in life-prolonging therapy decisions, 321, 326 pharmaceutical research spending, 59-60 political contributions, 346, 347-348 research grant review process, 443 selling of fetuses for research, 483, 484 Eichner, In re, 314, 316 Elderly persons artificial nutrition and hydration for, 121-122 ethical dilemmas in care for, ix health care reform and, 57-58 ELSI Working Group. See Ethical, Legal, and Social Implications Working Group Emergency medical services, 329 Energy, Department of, 97, 437 Epistemology moral philosophy, 201-203 trust-dependency in scientific knowledge, 392-396 in utilitarianism, 207 Equal Employment Opportunity Commission , 352, 452 Eschatology, 362, 379 Ethical, Legal, and Social Implications (ELSI) Working Group, ix, x, 6, 74 on Americans with Disabilities Act, 442, 447, 452, 453 budget, 437 bureaucratic status, 438, 446, 453-454 cystic fibrosis screening program, 447-449 development of, 437-438 on family genetic research, 450 genetic research bioethics prior to, 434-436 grants program, 443-445, 447 on insurance issues, 450-452 membership, 97, 438-439, 442, 512 opportunities for improvement, 454 origins, 28-29, 96-97, 433-434, 436-437 in policymaking, 442, 445-447, 451-452 , 453-454 in public education, 444, 453 recommendations for, 16, 179 reports, 513 on research procedure, 449, 450 research topics, 440-442 role of, 3, 97, 135, 175-176, 512 scope of deliberations, 439-440, 512 significance of, 453 Ethics Advisory Board (EAB), 172, 454 demise of, 93, 95, 173, 305n.1 mandate, 94, 173, 495n.22, 504 membership, 94, 504 as model for ethics commissions, 19, 186 origins, 94 reports, 94-95, 504 European Community, 109, 113-115

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Society's Choices: Social and Ethical Decision Making in Biomedicine Euthanasia, 18-19, 36, 184, 317-318, 319-320 ethical vs. policymaking perspectives in, 219, 223, 224-225, 227-228, 234-235 vs. refusal of treatment, 309 Evaluation of commissions citations to National Commission as criterion for, 270-274 citations to President's Commission as criterion for, 270-272, 274-276 comparative, on life-prolonging medical treatment, 307-308 consensus as criterion for, 13, 160-162,257-258 criteria, 9-14, 114-115, 152-153, 171-174, 262-263 as educational mechanisms, 152 hospital ethics committees, 427-428 institutional review boards, 17-18, 125, 181-182 legal influence as criterion for, 13 methodology for, 269-270, 276-280 obstacles to, 150-152, 166, 171-173 by participants, 276-280 policy influence as criterion for, 152, 280, 304-305 Expert witnesses, 76, 80, 118, 340-341 Experts in ethics qualifications, 10 resources of science and law in, 76-77 F Facts, 80 Faden, Ruth, 467, 468 Federal Coordinating Committee on Science and Technology, 442 Federal government absence of bioethics review in, 116-117, 118, 168, 173 bioethics advisory bodies, 6, 94-99, 186 biomedical research funding, 58-59 executive branch in policymaking, 351-353 on fetal tissue research, 481-484, 485 genetic testing issues in, 175 in health care policymaking, 335-336 health insurance programs, 54-55 human research regulation, 7, 31, 32-34, 89 legislative authority, 345-346 in new medical technology development, 38-39 political process, 45-46 recommendations for, 19, 186 in scientific research, 61-63 See also Congress, U.S.; specific agency; Federal Technology Transfer Act, 59 Feminist philosophy, 73, 79, 165 Fetal disorders, viii Fetal protection laws, 337 Fetal tissue research, 168, 306n.4 abortion and, 97, 98, 138, 162, 173, 481, 482-483, 484, 496-497nn.37-38 bioethics commissions on, 481-486 Biomedical Ethics Board on, 94 in Canada, 485-486 contributions of, 480, 486 ethics issues in, 482-483 federal guidelines, 481 French bioethics commission, 479, 486-493 funding for, 481, 485 HFTTRP on, 6, 97-99, 172, 173, 191, 482-484, 495n.26 moral arguments in, 244 National Commission on, 283 political context of policy debate, 353, 479, 480, 495n.29 professional societies on, 484-485 state regulations, 480-481 supra-agency commission on, 186 transplantation, 97-99 Fialuridine, 124 Firth, R., 71 Fletcher, Joseph, 34, 69 Florida, 315 Food and Drug Administration, 17, 40, 51, 53, 182, 468 Foundationalist beliefs, 225-226, 232, 239n.6 Fox, Renee, 82 France, 112, 114, 478-479, 486-493

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Society's Choices: Social and Ethical Decision Making in Biomedicine Freedom of Information Act, 91, 95, 266 Futility of medical care, 320-321, 327, 330 G Gays and lesbians, 52-53, 137 HIV screening, 459-463, 464 political mobilization of, 459, 469 General Accounting Office, 347 Genetic research, 7, 27, 130, 362 academic-industry relationships in, 40 commercialization issues, 440 conflict of interest in, 442 ELSI in policymaking for, 453-454 ethical dilemmas in, 3, 29, 39 evolution of ethics concerns in, 434- 437 in families, guidelines for, 450 in France, 487 government oversight, 15, 93-94 insurance issues and, 442, 450-452 marker cells, 96 multilevel impacts, 175-176 President's Commission on, 152, 266, 289 public education, 453 religious thought on, 135 social impacts, 97 somatic cell vs. germ cell in, 435 supra-agency commission on, 186 See also Human Genome Project; Recombinant DNA research; Genetic screening, 19, 129 community response, 139-141 for cystic fibrosis, 447-449 ELSI program research topics, 440 in France, 489-490 state responsibility, 19, 184 Golding, Martin, 69 Gore, Albert, Jr., 93, 435, 436, 437 Government. See Congress, U.S.; Federal government; Policymaking; State governments Grant applications ELSI program 443-445 447 ethical implications reviewed in, 16 federal ethics board for review of, 477 at National Institutes of Health, 443 reductionism in review process, 443 trends, 40 Grassroots organizations, 5, 8-9, 87, 88, 165 bioethics deliberation in, 136-139 in policymaking, 43-44, 46, 178 in state policymaking, 185 Griswold v. Connecticut,105-106, 341 Groupthink, 256-257 Gustafson, James, 69 H Harris, Patricia, 95 Hastings Center, 8, 69, 132-133, 410, 461-463, 466 Health, Education, and Welfare Department of, 6, 32, 33, 90, 91, 93, 94-95 Health and Human Services, Department of, 118, 173, 341, 351, 445-446, 453-454, 477 Human Fetal Tissue Transplantation Research Panel, 97-99 recommendations for, 19, 22, 186, 192 Health care agent, 325-326 Health Care Financing Agency, 175 Health care professionals bioethicists, 68 conscientious objection to lifeprolonging therapy decisions, 328, 331 ethics training for, 18, 81-84, 182-183 with HIV, 349n., 350 humanistic training for, 82 status of, 35, 55 training in technology vs. caretaking, 80-81 women as, 51 Health care reform, ix advocacy in, 14 aging population and, 57-58 American political tradition and, 45

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Society's Choices: Social and Ethical Decision Making in Biomedicine citizen participation in, 143-144 ethical decision making in, 8, 177-178 ethical issues in, 15, 27, 170 evaluation of process in, 353-354 insurance trends, 55 legislative effort, 350-351 lobbying in, 351 patient rights issues in, 36 state role in, 18, 185 Health care resource allocation, 7, 359 dialysis technology, vii-viii, 39 ethical dilemmas in, vii-viii, 2, 15, 30 ethical system for transplant allocation, 254 Institute of Medicine on, 7, 128 in intensive care units, 119 in legislative process, 350 Oregon program, 141-143 participants in design of, 143 practitioner guidelines, 120 supra-agency commission on, 186 Health care system accountability in, 35-36 Americans with Disabilities Act and, 348 consumers in, 53-55 deliberative capacity in, 177 development of hospitals in, 55-57 employment-based health coverage in, 54 ethical issues in, 2-3, 34 ethics advisory bodies in, 7 executive branch in policymaking for, 351-353 finance issues, 37-38 financial structure, 58 gays and lesbians in, 52-53 judiciary in policymaking for, 339-345 legislative processes in policymaking for, 345-351 life-prolonging treatment decisions, conceptual evolution of, 311-313 minorities in, 48-50 new technologies in, 35, 38-39 policymaking goals, 335 policymaking process, 335-336 reimbursement systems in, 54-55 self-care movement in, 136, 137 women in, 50-52, 78 See also Health care professionals; Health care reform Health maintenance organizations, 35, 116, 120 Healy, Bernadine, 442, 445-446 HFTTRP. See Human Fetal Tissue Transplantation Research Panel Hippocratic tradition, 30 HIV. See AIDS/HIV Hobbes, Thomas, 203-204, 205, 210, 211 Hospital ethics committees, 3, 5, 77 administrative structure, 419 consensus-making in moral decisions, 248 consultative process, 415-418 cost containment issues, 426-427 disagreement with decisions of, 417- 418 documentation, 417, 419 educational role, 414-415 effectiveness of, 127 evolution of, 125-126, 325, 327-328, 409-412 future of, 127 genetic testing issues, 175 guidelines for, 119 leadership, 419-420 legal liability, 425-426 in long-term care settings, 424-425 membership, 126, 420-423 networks, 126-127, 423-424 performance evaluation of, 427-428 prevalence, 413 professional ethicists in, 422-423 recommendations for, 17, 180-181 role of, 7, 126-127, 181, 411, 413-418 standard of care issues, 426 Hospitals, 178 financial management in, 37 in life-prolonging treatment decisions, 308, 311 spending in, 58 trends, 55-57 Human Fetal Tissue Transplantation Research Panel (HFTTRP) , 6, 97-99, 172, 173, 191, 482-484, 495n.26

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Society's Choices: Social and Ethical Decision Making in Biomedicine Human Genome Project, ix, 3, 6, 28-29, 39, 63, 74, 168, 351-352 budget, 432 goals, 433 origins of, 432 significance of, 432-433 See also Ethical, Legal, and Social Implications Working Group Human research subjects, x, 1, 27, 113 AIDS and, 468-470, 471 compensation/incentives for, 123, 266, 290 confidentiality issues, 123 federal oversight, 90, 94, 266 historical concerns/developments, 2, 30-31, 89 informed consent for, 123 institutional review boards for, 122-124 international bodies on, 108 minorities as, 51 National Commission on, 216, 266, 284 President's Commission on, 289, 290 regulations for protection of, 2, 31-34, 91, 172, 174 risk assessment, 123 subject truthfulness, 471-472 vulnerable populations, 123 women as, 51, 129 Human rights, 339 AIDS/HIV issues, 459-460, 466 antidiscrimination legislation, 348-349 in legal health care decisions, 345 tuberculosis control and, 472-473, 474 Hume, David, 203, 205-206 I Idaho, 313,314 Ideal Observer theory, 71 Immunizations, 15, 170 Impartiality in ethics commissions, 102, 156 as moral philosophical concept, 208-209 in policymaking, 337 In vitro fertilization, 15, 116-117, 170, 490 government oversight, 94, 95, 173 research funding, 118 Individual interest in American social tradition, 3-4, 43-44 collective self-interest and, 203-205 in construction of moral belief, 202, 203 in ethical debate, 29 impartial resolution of conflicts in, models of, 208-209 in moral system, 233 in natural rights formulation, 205,206 public interest vs., viii, 213 public interest vs., in research protocols, 470 in reproductive decisions, 105-106 in universalizability formulation of morals, 207, 208, 213 in utilitarian philosophy, 205-207, 208, 211 Infectious disease classification of, as policy issue, 336-337 state responsibility, 19, 184 tuberculosis, 472-474 Informed consent, 2, 119 conceptual development in health care, 34-36 as HIV issue, 458 in human subject research, 31 in institutional review board criteria, 123, 124 in Patient Bill of Rights, 36 President's Commission on, 92, 93, 162, 266, 286-289 right to refuse treatment, 105 Institute for Society, Ethics, and Life Sciences, 69 Institute of Medicine, 7, 261-262 bioethics deliberations in, 127-130 membership, 127-128 recommendations for, 17, 181 Institutional ethics committees. See Hospital ethics committees

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Society's Choices: Social and Ethical Decision Making in Biomedicine Institutional review boards, 2, 5, 91, 178, 283 development of, 428n.1 documentation, 124 evaluation of, 17-18, 125, 181-182 Hasting Center on, 133 limitations of, 124 origins of, 33, 122 review procedures, 123 role of, 7, 122 structure, 122-123 Insurance system, 2 antidiscrimination regulations, 352 ELSI and, 442 employers in, 54 expenditures, 58 genetic research and, 97, 450-452 HIV and, 458 Medicare and, 54-55 participation in, 54 recent developments, 37-38 risk selection, 54 rends, 55 Intellectual property rights legislation, 59 Intensive care units, 119 International Association of Bioethics, 109 International comparisons bioethics forums, 6, 107-115 French bioethics commissions, 478-479, 486-493 Intuitional ethics, 77-79, 211, 221-222, 239n.6 Italian Americans, 140 IUDs, 51 J Japan, 133 Jehovah's Witnesses, 248, 359 Jewish people, Tay-Sachs disease risk for, 140-141 Jewish thought, 134, 156 Johnson administration, 48 Joint Commission on Accreditation of Health Care Organizations (JCAHO) , 36, 125, 126, 181, 411, 412, 413, 414, 415-416, 419, 423, 427 Jonas, Hans, 69 Jonsen, A. R., 239-240n.7 K Kaback, Michael, 140 Kant, Immanuel, 203, 207-208, 250, 258-259n.5 Kennedy Institute of Ethics, 8, 69, 90, 132, 133 Koop, C. Everett, 53 Krim, Mathilde, 461 L Leake, Chauncey, 68-69 Legal system, 5 accountability of science in, 79-80 advance directives in, 343 antidiscrimination legislation, 348- 349 care for severely impaired newborns in, 411 cites to National Commission, 272- 273 cites to President's Commission, 274 context of ethics commissions in, 220 definition of death in, 102 in do not resuscitate guidelines, 324 documentation of hospital ethics committee proceedings, 417 establishment of hospital ethics committees, 412 as ethical decision-making mechanism, 6, 104-107, 171 evaluation of ethics advisories in, 13 fetal protection laws, 337 forms of public discourse and, 76-77 in health policy formulation, 339-345 informed consent concept in, 34-35 liability of hospital ethics committees, 425-426 life-prolonging treatment decisions, 121-122, 308, 313-316, 342 malpractice claims, 38 mental health policy in, 343, 344-345

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Society's Choices: Social and Ethical Decision Making in Biomedicine in policymaking process, 337 professional organizations in, 180 regulation of biomedical research, 58-59 as regulatory mechanism, 106-107 reproductive issues in, 105-106, 341- 342 right to refuse medical treatment, 36, 105, 313-316 scientific method and, 76 scientific testimony, 76, 80, 118, 340-341 surrogate decision-making apparatus in, 318 Levine, Carol, 470, 471 Life-sustaining procedures/ technologies, 7 allocation dilemma, vii-viii components of moral decision making, 376-377 concept of futility in, 320-321, 327, 330 conceptual evolution in health care, 311-313 conscientious objection to decision making, 328, 331 current consensus, 308-309 economic justification, 321, 326 institute of Medicine on, 128 institutional responsibilities in decision making, 308, 311, 315, 317, 324 legal conceptualizations, 105, 180, 313-316, 342-343 moral evaluation in decision making, 372, 379-380 New York State Task Force on, 307, 308, 322-332 nonpersonhood issues in, 320 patient classification systems for decisions in, 311, 312 patient competency in decision making, 308, 309, 313, 315-316, 322 , 329-330 patient's perspective in, 308, 312, 317 for persistent vegetative state patients, 320 practitioner guidelines, 118, 119 President's Commission on, 101-102, 307, 308, 310-311, 313, 316-322 refusal of, euthanasia vs., 309, 314, 319 refusal of, suicide vs., 309, 314, 315, 319 right to refuse, 36, 308, 342 for seriously ill newborns, 121, 318-319, 411 state regulation of, 18, 172, 184 supra-agency commission on, 186 surrogate decision making, 309, 313, 314, 315, 316, 318-319, 324, 325-326 withdrawal of, x, 105, 313-322, 342-343 Living wills, 309, 314, 317, 318, 326 Lobbying, 346, 347-348 Locke, John, 203, 204-205, 206, 208, 393, 397 Long-term care facilities, 424-425 Lowe, Charles U., 267-268 M Majority rule, 245-246 Malpractice, 38, 118 hospital ethics committees and, 425-426 Managed competition, 55, 57 Maryland, 412, 413, 425 Massachusetts, 315-316, 317 McGann v. H & H Music Company,352 McKusick, Victor, 438 Mechanisms of ethical decision making citizen participation in, 143-144 contributions of, 87-88 dimensions of, 113-115 ethics centers as, 8, 69, 131-133 formal vs. informal style, 77 goals of, 88-89 grassroots efforts in, 136-139 historical developments, 2-3 impartiality in, 29, 71 Institute of Medicine as, 129-130 legal system as, 104-107 in multitiered system, 177-178

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Society's Choices: Social and Ethical Decision Making in Biomedicine Office of Technology Assessment as, 131 professional forums, 115-122 professional guidelines as, 120-122 public forums, 5 range of, 87 religious formulations in, 134-135, 371-377 role of, ix-x scientific and legal models for, 76-77 in state government, 19, 184-185 See also Commissions on bioethics Medicaid, 48, 343 Medical schools, bioethics training in, 69, 81-84, 182-183 Medicare, viii, 37, 54-55, 56, 125, 343, 424 Membership of commissions Biomedical Ethics Advisory Committee, 94 , 454n.1, 514-515 ELSI Working Group, 97, 438-439, 442, 512 Ethics Advisory Board, 94, 504 evaluation of national commissions by, 276-280 hospital ethics committees, 126, 420-423 individual commitment of, 303-304 leadership, 299 National Commission, 90-91, 100-101, 267, 505 New Jersey Commission on Legal and Ethical Problems in the Delivery of Health Care , 518-519 New York State Task Force on Life and the Law, 516-517 President's Commission, 92, 100-101, 268, 269, 507-508 qualifications, 154 Recombinant DNA Advisory Panel, 510-511 staff functioning, 302-303 supra-agency recommendations, 21, 22, 189 terms of, as performance factor, 299 Mental health care deinstitutionalization, 343-344 hospitals, 90 legal decisions in, 343, 344-345 Mental hospitals, 91 Merton, Robert, 400, 401 Mexico, 110 Mifepristone. See RU-486 Mill, John Stuart, viii, 206 Minorities, 48-50, 51, 156 Missouri, 480 Mitterand, François, 488 Mondale, Walter, 89, 90 Moral philosophy, 27-29, 70-73 bioethical questions in, 252 in bioethics debate in France, 489-490, 491-492 Categorical Imperative, 207, 250, 258-259n.5 coherentist account, 232, 233 collective self-interest in, 203-204 concept of expertise in, 212 consensus in, 217 considered judgments in, 229-231 contractarian view, 207, 259n.7 critical screening process for judgments in, 229-231, 235-236 decision-making methodology of ethics commissions vs., 217-218, 223, 239 deductivism in, 223-226, 229, 231, 232 differences of taste vs. moral differences, 227-228 dimensions of religious belief, 359-360, 370-371 epistemological methodologies in, 203 as epistemological subject, 201-202 expertise in, 222 foundational beliefs in, 225-226, 232, 239n.6 generalizability of, 231, 233 goals of, 211-212, 213 good and evil in, 361-363, 379 guidance for conduct, 368-370, 373 human agency formulations in, 375- 376 in human embryo research debate, 244-245 identification of, in ethics commission justifications, 234- 235

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Society's Choices: Social and Ethical Decision Making in Biomedicine impartial resolution of conflicts, 208-209 individual differences and, 375 individual moral systems, development of, 233-234 interaction of belief factors, 377-382 interaction of loyalties in, 374-375, 376, 377-379 intuition in, 77-79, 211, 221-222, 239n.6 justification of actions, 376-377 methodology, 215 moral knowledge vs. factual knowledge, 202-203, 388-389 moral way-of-life, 249-251 moral world-view, 249, 250-251 morality as consensus, 202, 211-212 natural rights formulations, 203, 204-205 notions of equality in, 208 overlapping consensus in policymaking, 237-238, 243-244 particularism in, 226-229, 239-240n.7 political legitimacy and, 201 priorities in, 209, 210-211 rational and reasonable behavior in, 251-252 reflective equilibrium in, 207-208, 232-236, 239-240n.7 relativism in, 236-237, 384 role of, 373 self-interest as basis of, 233 situational analysis and, 372-373 sources of moral authority, 366-368 universalizability formulation, 203, 207-208, 213 utilitiarianism, 205-206, 207, 208, 210, 211, 223-224, 226, 244, 258-259n.5 Moreno, Jonathan, 242 N Narrative ethics, 165 National Abortion Rights Action League, 8, 137, 138 National Academy of Sciences, 7, 77, 127, 434-435 National Advisory Board on Ethics in Reproduction, 7, 118-119, 180 , 485 National Cancer Institute, 449 National Center for Human Genome Research, 3, 63, 96-97, 135, 437-438 , 446 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) , viii, 33, 157 accomplishments of, 70, 102, 163, 171, 172, 174, 269, 297 action-forcing power, 91, 101, 174, 191 assessing effectiveness of, method for, 269-270 bureaucratic location, 267-268, 299 citations to, 269, 270-274 consensus in, 243 evaluation by participants, 276-285, 291-293 on fetal research, 481 mandate, 90, 101, 266, 285, 505 membership, 90-91, 100-101, 265, 267, 505 origins of, 2, 6, 90, 481 on patient rights, 36 policy influence, 280-283, 294-295, 304 President's Commission and, 100-102, 263-265, 266-267, 294-296 products of, 91-92, 101-102, 262, 506 role of, 70, 101, 216 staff role, 302 structural factors in performance of, 103, 267-268, 269, 293, 296-297 , 299 National Council of Churches, 135 National Heart Institute, 89-90 National Institutes of Health, 129, 353 bioethics advisory bodies, 6 in biomedical research funding, 38, 39, 48, 62 genome research, 437-438 grants management in, 40, 62, 443 human research guidelines, 31, 51

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Society's Choices: Social and Ethical Decision Making in Biomedicine National Center for Human Genome Research, 3, 63, 96-97 National Commission and, 267-268 National Research Service Award, 189 pedigree studies workshop, 450 Recombinant DNA Advisory Committee, 95-96 recommendations for, 16, 17, 179, 182 in vitro fertilization research, 94 National Organization for Women, 50 National Research Act of 1974 , 33, 90, 122, 267, 481 National Research Service Award, 189 National Right to Life Committee, 8, 138-139 National Science Foundation, 58, 62 Natural rights, 203, 204-205, 206 Nazi Germany, 2 Nevada, 313, 314 New Jersey, 314, 410 New Jersey Commission on Legal and Ethical Problems in the Delivery of Health Care, 6, 99-100, 103, 156, 157, 163, 185, 518-519 New technologies, ix bioethical deliberation in development of, 16, 78-79, 178-179 government funded, 58-59 government oversight, 89-90 medical ethics and, 35, 38-39 socially-constructed value of, 77-78 as source of ethical dilemmas, 2, 3, 30 training of physicians in, vs. caregiving skills training, 80-81 New York, 316, 317 New York State Society of Surgeons v. Axelrod,336 New York State Task Force on Life and the Law, x, 19, 99, 157, 162, 163, 171, 172 on advance directives, 163 closed meetings of, 157, 171 on do not resuscitate orders, 323-325, 328-330 on hospital ethics committees, 327-328 on life-sustaining medical treatment, 172, 307, 308, 322-332 mandate, 6, 99, 323, 516 on medical staff conscientious objection, 327-328 membership, 516-517 origins, 99, 322 reports, 99, 172, 517 on surrogate decision making, 325-331 on surrogate parenting, 162 Newton, Isaac, 398-399 Noninvasive assessment, 30-31, 57 Norplant, 156 North Carolina, 313, 314 Nuffield Foundation Council on Bioethics, 113 Nuremberg Code, 2, 31, 89 Nurses/nursing, 82, 416, 421 O Office of Science and Technology Policy, 22, 192 Office of Technology Assessment bioethics deliberations in, 7, 127, 130-131 on cystic fibrosis screening, 449 in evaluation of bioethics commissions, 171 on genetic research, 176, 435, 442 political process and, 131 recommendations for, 17, 181, 192 role of, 130, 261, 346-347 structure, 130 Oklahoma, 480 Oregon, 141-143, 185 right to refuse life-prolonging treatment in, 313, 314 Organ transplantation, 99, 184 Outcomes research, 36 Outpatient care, 57 P Pan American Health Organization, 109 Parkinson's disease, 480, 481

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Society's Choices: Social and Ethical Decision Making in Biomedicine Patents and trademarks, 59, 442 Patient Bill of Rights, 36 Patient competency, 308, 309, 313, 315-316, 322, 329-330 Patient rights, 91 conceptual development, 34, 91 ethical dilemmas in, 35 hospital accreditation and, 125 hospital ethics committees and, 181 infant patient, decision making for, 318-319 proxy authority. See Surrogate decision making to refuse treatment, 105, 308 social movement for, 4, 34, 36 terminally ill, 94, 99 See also Informed consent Patient Self-Determination Act, 105, 184, 343, 412, 415 Patriotism, 374 Peer review, 76, 89 in grants process, 443 Pennsylvania, 480 People with AIDS Coalition, 469 Persistent vegetative state (PVS), 314, 316, 318, 320 Personhood issues, 320 Pharmaceutical industry AIDS treatments, 53, 138, 470-472 contraception research, 138-139 new product development, 59-60 physicians and, 119 women's movement and, 51 Philanthropy, 37 Physicians disagreement with hospital ethics committee, 417-418 hospital ethics committee consultations, 415-417 as hospital ethics committee members, 420-421 malpractice risk management, 38 pharmaceutical industry relations, 119 training of, recommendations for, 18, 182-183 See also Health care professionals Planned Parenthood of Southeastern Pennsylvania v. Casey,106, 341-342 Policymaking abortion deliberations, 187-188, 477-478 AIDS issues, 458-459, 474-475 American tradition, 43-44 bioethical philosophy in, 72-73 bioethicist-activist collaborations, 475 classification of disease in, 336-337 diversity of views in, 332, 454 ELSI program in, 442, 445-447, 451-452, 453-454 ethical decision making in, viii, 218-222, 239 ethical issues as subjects of, 5-6 as evaluation criteria for bioethics bodies, 152, 280, 304-305 evaluation of advisory reports in, 9-14 evaluation of proposals, 338-339 executive branch in, 351-353 expert ethics advisors in, 8, 67-68 fetal tissue research in, political context of, 479, 480 forums for ethical debate, 5 framework for, 336-339 French bioethics commissions in, 478-479, 486, 493 gay and lesbian issues in, 53 genetic research in, 434-437 as goal of bioethics commissions, 1-2, 216-217 grassroots movements in, 8-9 in health care, 335-336 HIV screening, 463-466 human rights considerations in, 339 impartiality in, 29, 71 information-gathering for, 337-338, 347, 351 interest group lobbying in, 346, 347-348, 351 judiciary in, 339-345 legislature's role in, 345-351 long-term perspective in, 348 minorities in, 48-50 moral conceptualizations in, 210, 212-213

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Society's Choices: Social and Ethical Decision Making in Biomedicine moral philosophy in context of, 201, 210, 212-213 multilevel approach, 15-16, 174-176, 177-178 national bioethics commissions in, 115 National Commission influence, 280-283 nongovernmental participants in, 16-18, 178-183 overlapping moral consensus, 237-238 participants in, 336 political process and, 45-46, 346, 347 President's Commission influence, 286, 289 professional organizations in, 116 public participation in, 337 religious groups in, 44, 46-48 research funding, 62, 444-445 research grant review process and, 443, 444-445, 449 restrictions on reasons for justification, 237-238 right to die legislation, 343 role of consensus in, 217 role of New York State Task Force on Life and the Law in, 323 single-interest advocacy in, 14, 156, 164-165, 475 systems of moral justification in, 223-228 value of commission consensus in, 247 women's movement in, 50 Power of attorney, 317, 318, 326 Preexisting conditions, 38, 54 Prenatal diagnosis, 489 Presbyterian Church, 8, 134 President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (President's Commission) , viii, ix, x, 73, 107, 157, 171 on access to care, 162 action-forcing power, 101, 191 on assisted suicide/euthanasia, 319-320 autonomy of, 103, 299 citations to, 269, 270-272, 274-276 consensus in, 246-247 context in evaluation of, 309 criticisms of, 286, 289 on defining death, 101, 151-152, 164, 216, 306n.12 effectiveness of, 174, 216-217, 269-270, 272, 297-299 evaluation by members of, 276-280, 285-291, 293-294, 306n.11 evaluation of, method for, 269-270 factors for success in, 293-294, 295-296 funding of, 92-93 on genetic research, 152, 435-436 on hospital ethics committees, 410-411 , 417 ideological conflicts, 293, 300-301, 306n.4 leadership, 268-269 on life-sustaining procedures, 307, 308, 310-311, 313, 316-322 mandate, 101, 266, 310, 507 membership, 92, 100-101, 268, 269, 507-508 National Commission and, 100-102, 263-265, 266-267, 294-296 openness of, 443 origins of, 92 on patient rights, 36, 105, 162 policy influence, 286, 289, 295, 304 products of, 93, 101-102, 153, 262, 269, 509 public education efforts, 163 role of, 3, 6, 92, 101 social justice issues in, 247-248 staff functioning, 302-303, 306n.6 structure of, 92-93, 265, 299 Prisons/prisoners, 90, 91, 209, 283, 284 Professional organizations/societies bioethics commissions in, 7, 115-122 ethical decision-making guidelines, 7, 82 on fetal tissue research, 484-485 international, 109 patient advocacy by, 180 public interest in, 16-17 recommendations for, 17, 179-180 in sciences, 397

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Society's Choices: Social and Ethical Decision Making in Biomedicine Property rights, 205, 206 Psychosurgery, 283, 284 Public debate fetal tissue research, 97, 98 in France vs. U.S., 492-493 national commissions in, 103 range of ethics forums, 87-89 role of courts in, 344 social context of, 143-144, 359 in state bioethics deliberations, 184 traditions of law and science in, 76-77 Public education, 13 ELSI Working Group in, 444, 453 as evaluation criteria for bioethics bodies, 152, 163 as goals of ethics commissions, 111, 217 national ethics commission in, 21, 110-111 open meetings and, 157 successful ventures, 163 Public Health Service, 32, 52, 90, 450, 453 Public interest American tradition of, 3-4, 43-44 bioethics in, 27 biomedical research as, 58 ethics issues as, 1-2 individual interest and, viii, 203-204, 213 individual interest vs., in research protocols, 470 professional conduct as, 16-17, 180 in utilitarian view, 206, 208, 210, 211 Public opinion authority of science in, 79 in construction of moral belief, 201-202 credibility of bioethics commissions in, 479-480 credibility of scientists in, 389-392 ethical decision-making capability of scientists in, 388 public participation in policymaking and, 156 role of government in, 44-45 science research in, 62-63 in shaping policy, 43-44 status of physicians in, 35, 55, 56 status of scientists in, 400-405 Q Quinlan, Karen Ann, 6, 99, 104, 105, 171, 314-315, 342, 344, 410 R Radiation studies, 33-34 Rahner, Karl, 69 Ramsey, Paul, 72, 372, 373, 378 Rationing of resources. See Health care resource allocation Rawls, John, 208, 220, 229, 232, 238, 243 Reagan administration, 53, 173, 293, 294, 299, 300, 306n.4, 352, 353, 477, 481,482 Recombinant DNA Advisory Committee , 6, 95-96, 175, 289, 435, 436, 510-511 Recombinant DNA research, 59, 78 concerns in, 95, 435 government oversight, 95-96 Recombinant DNA technology, 59 Relativism, 236-237, 384 Religious communities in bioethical discussion, 4-5, 8 bioethics deliberations in, 134-135 child abuse exemptions, 119 community relationships, 363-366 dimensions of belief, 359-360, 370-371 hospital ethics committees and, 422 interfaith, 135 on life-prolonging therapy, 322-323, 328 patterns of participation, 382-383 in policymaking, 44, 46-48 priestly religion, 381-382 prohibitions against lifesaving medical procedures in, 248 in public discourse, 74-75 in state bioethics commissions, 99 See also Theological thought

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Society's Choices: Social and Ethical Decision Making in Biomedicine Reproductive rights, 50-51 HIV testing and, 467 legal decisions, 105-106 legal proceedings, 341-342 political conflicts over, 352-353 Reproductive technologies, ix, 90, 97, 110 bioethics debate in France, 489-490 European commissions on, 112, 113 in medical research, 489 prenatal diagnosis, 489 professional self-regulation, 118-119 state regulation, 18, 106, 184 Research protocols AIDS/HIV, 468-472 confidentiality in AIDS research, 459-463 ELSI contributions, 449, 450 fetal tissue transplantation, 97-99 germ-line cell manipulation, 96 government oversight, 6, 7, 89, 118 institutional review boards in review of, 122-124, 182 professional self-regulation, 119 psychosocial impact assessment in, 449 recombinant DNA, 96 Risk management, 38 Risk selection, 54 Robertson, John, 484 Roe v. Wade, 105, 106, 171, 341, 342, 344, 353 Roman Catholic Church, 72, 74, 134, 409 RU-486, 52, 112, 138-139, 168, 353, 478 Ryan, Kenneth, 268, 482, 485 S Salz v. Perlmutter, 314, 315 Sandoz Pharmaceutical Corporation, 40 Schwitalla, Alfred, 31 Scientific community advisers to Congress, 346-347 in bioethical decision making, 5, 75-76, 78-79, 80 credibility of, 389-392 ethical intuition in, 77-79 ethical sense in, 388-389 ethics advisory bodies in, 7 executive branch advisers, 351, 352 French, 479 integrity of members of, 396-398 legal accountability, 79-80 moral authority of, 403-405 policing of, 401-403 social authority of, 79-80 special insight of, 75, 78-79 virtuousness of, 398-400 Scientific method credibility of, in public opinion, 392 as discursive model, 76-77 embedded values in, 79 ethical nature of, 75 facts in, 80 legal process and, 76 moral knowledge vs. factual knowledge, 202-203, 388-389 in style of public discourse, 76-77 trust-dependency in, 393-396 Scripps Research Institute, 40 Self-help movements in health care, 136, 137 women's, 51 Shapiro, Harold, 61 Sickle cell anemia, 48, 49, 139-140, 141 Silicone breast implants, 51 Sinsheimer, Robert, 78 Situational analysis, 372-373, 376 Small Business Patent Procedure Act, 59 Smoking, 139 Social workers, 421 Society for Health and Human Values, 81 Sociology, 400 Sources of ethical dilemmas anticipating, 168-169 cumulative effects, ix, 15, 170 in current environment, 2-3, 168 definitional issues, 27-29 evolution of, 1, 3-4, 27 Specialization in medicine, 3, 34, 35, 37, 56 Sperry, Williard, 69 Spina bifida, 319

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Society's Choices: Social and Ethical Decision Making in Biomedicine Spring, In re, 314, 316 State governments abortion regulation, 106, 342 bioethics advisory bodies, 6, 99-100 bioethics commissions, 99-100 constitutional authority, 346 death and dying legislation, 105, 313-316 executive branch in policymaking, 351-353 fetal tissue research regulation, 480-481 genetic testing regulation, 175 in health care policymaking, 335-336 national commission findings and, 103, 185 political process, 45 President's Commission influence, 272, 286 recommendations for, 18-19, 176-177, 183-185 See also specific states Sterilization, 118 Stevenson-Wydler Act, 59 Storar, In re, 314, 316, 317 Superintendent of Belchertown Hospital v. Saikewicz,314, 315-316 Supra-agency ethics commission action-forcing powers, 21-22, 191 advantages of, 20, 187 advisory role, 21-22, 190-191 appointment process, 21, 189-190 dissemination of findings, 190-191 duration, 20, 22, 192 educational role, 21 external advisory committee for, 23 funding and staff, 22, 191 government sponsorship, 189 interim operations, 23, 192-193 mandate, 20-21, 186-188 membership structure, 21, 22, 189 models for, 15 in multitiered system, 15-16, 174-175 public participation, 190 recommendations for, 19-23, 186-193 resources for, 22 Surrogate decision making in absence of patient guidance, 326-327 best interest standard, 315, 324, 326, 327 documentation for, 329 health care agent for, 325-326 in home care, 329 for incompetent patients, 313, 318-319 legal environment, 342 legal instruments in, 326 New York State Task Force, 99, 324 parents in, 315 state statutes, 313, 314, 316 substituted judgment standard, 309, 315, 316, 324, 326, 327 Surrogate parenting, 99, 100, 106, 118, 162, 342 practitioner guidelines, 120 Swine flu vaccine, 306n.8 T Tay-Sachs disease, 140-141 Technology transfer genetic science, 40-41 legislation, 59 university-industry collaborations and, 61 Teel, Karen, 409-410 Terminally ill patients, 94, 99, 119, 266 artificial nutrition and hydration guidelines, 121-122, 309, 314 do not resuscitate orders, 163-164, 323-325, 328-330 legal guidelines for treatment decisions, 342-343 as research subjects, 124, 469-470 See also Life-sustaining procedures/ technologies Testart, Jacques, 490 Texas, 313, 314 Theological thought basic questions in, 385n.3 in bioethics, 73-74, 134, 383-385 concept of human loyalties in, 377- 379

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Society's Choices: Social and Ethical Decision Making in Biomedicine conceptualizations of deity in, 360-361, 365, 367, 377-378, 379-380 conceptualizations of good and evil in, 361-363, 379 in medical decision making, 371, 379-380 moral guidance in, 368-370 in moral philosophy, 72 sources of knowledge in, 366-368 Therapeutic misperception, 124 Thielicke, Helmut, 69 Toulmin, Stephen, 239-240n.7, 243, 258n.2 Transplantation technologies, vii, 99 allocation guidelines for, 254-255 fetal tissue research, 97-99, 162, 480, 484 heart, 89-90 organ procurement from anencephalic infants, 119 state regulation of, 19, 184 Troeltsch, Ernst, 359, 364, 365 Tuberculosis, 459, 472-474 Tuskegee syphilis study, 2, 32-33, 48, 49, 90 U UNESCO, 108 Uniform Anatomical Gift Act, 480, 481 Uniform Determination of Death, 151 United Kingdom, 112-113, 114 United Nations, 108 United Network on Organ Sharing, 254-255, 258 Utilitarianism (consequentialism), 205-207, 208, 210, 211, 223-224 , 226, 244, 258-259n.5 V Vaccines, 59 W Walters, Leroy, 482, 484 Wanglie, Helen, 320 Warnock, Mary, 244 Warnock Committee, 114, 244-245, 258, 258n.3 Watson,James, 63, 78, 433-434, 437, 438, 442, 448 Weber, Max, 359, 362 Wexler, Nancy, 438 Whistleblowing, 290 Wilkinson v. Vesey, 34 Windom, Robert, 97 Wise, Bob, 445-446 Wolf, Susan M., 246-247 Women's health issues, 50-52, 79, 129 Working Group on HIV Testing of Pregnant Women and Newborns, 467-468 Workplace drug testing in, 112 genetic research implications, 97 genetic testing in, 440 health care insurance in, 54 World Council of Churches, 135 World Health Organization, 108 World Parliament of Religions, 135 Wyngaarden, James, 97, 438 Y Yesley, Michael, 268

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