Index
A
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
Abram, Morris B., 246-247, 269
Academic-industry collaboration, 2, 3, 27, 39-41
benefits of, 60-61
ELSI Working Group on, 441-442
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
AIDS Coalition to Unleash Power (ACT-UP), 8, 53, 137, 138, 469, 471
antidiscrimination legislation, 349, 350
confidentiality in autopsy reports, 117
confidentiality in research, 459-463
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 protocols, 468-472
testing pregnant women and newborns, 467-468
tuberculosis and, 472-474
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
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
B
Baby Doe issues, 102, 119, 121, 318-319, 411
Baby Mcase, 100
Barnes, Barry, 394-395
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
Beta-thalassemia, 140
Bioethics
academic development, 67-70
centers for study of, 8, 69, 131-133
complexity of moral decision making in, 252
current deliberations, 73, 168
as government domain, 5-6
multidisciplinary investigations, 74- 75
as philosophic discipline, 70-73
professional forums for consideration of, 7-8
professional practitioners, 68, 423
in public discourse, 68, 72-73
Biomedical Ethics Advisory Committee, 6, 437
expiration, 94, 187, 305n.1, 454n., 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
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
C
Calvin, John, 370
Canada, 110, 115, 428n.3, 485-486
Cancer, 480
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
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
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
consensus-building in, as evaluation criterion, 13, 160-162, 257-258
contextual assessment of, 331-332
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
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
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
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
role of, 261
role of consensus in, 252-253
single-interest advocacy in, 14, 164-165, 475
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
in AIDS/HIV research design, 470-471
in bioethics commissions, 252-253, 257-258
closed meetings and, 157-159
complete form, 242-243
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
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
private research, 138-139
Contractualist philosophy, 207, 259n.7
Cooperative Research and Development Agreements, 40, 59
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
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
DES. See Diethylstilbestrol
Diabetes, 480
Dideoxyinosine, 53
Diethylstilbestrol, 51
Disease screening
sickle cell anemia, 49
tuberculosis, 473-474
Documentation
for do not resuscitate orders, 325, 329
of hospital ethics committee proceedings, 417, 419
Drug testing, 112
Duty to care, 426
as HIV issue, 458
E
Economic issues
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
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
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
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
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
as model for ethics commissions, 19, 186
origins, 94
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
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
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
ethics issues in, 482-483
federal guidelines, 481
French bioethics commission, 479, 486-493
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
Florida, 315
Food and Drug Administration, 17, 40, 51, 53, 182, 468
Foundationalist beliefs, 225-226, 232, 239n.6
Fox, Renee, 82
Freedom of Information Act, 91, 95, 266
Futility of medical care, 320-321, 327, 330
G
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;
community response, 139-141
for cystic fibrosis, 447-449
ELSI program research topics, 440
in France, 489-490
Golding, Martin, 69
Gore, Albert, Jr., 93, 435, 436, 437
Government. See Congress, U.S.; Federal government; Policymaking; State governments
Grant applications
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
humanistic training for, 82
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
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
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
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
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
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
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
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
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
Human rights, 339
antidiscrimination legislation, 348-349
in legal health care decisions, 345
tuberculosis control and, 472-473, 474
I
Ideal Observer theory, 71
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
tuberculosis, 472-474
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
Institutional ethics committees. See Hospital ethics committees
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
review procedures, 123
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
French bioethics commissions, 478-479, 486-493
Intuitional ethics, 77-79, 211, 221-222, 239n.6
Italian Americans, 140
IUDs, 51
J
Japan, 133
Jewish people, Tay-Sachs disease risk for, 140-141
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
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
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
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
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
hospital ethics committees and, 425-426
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
Institute of Medicine as, 129-130
legal system as, 104-107
in multitiered system, 177-178
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
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
Mexico, 110
Mifepristone. See RU-486
Missouri, 480
Mitterand, François, 488
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
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
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
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
rational and reasonable behavior in, 251-252
reflective equilibrium in, 207-208, 232-236, 239-240n.7
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
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
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
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
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
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
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 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
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
on medical staff conscientious objection, 327-328
membership, 516-517
on surrogate decision making, 325-331
on surrogate parenting, 162
Newton, Isaac, 398-399
Noninvasive assessment, 30-31, 57
Norplant, 156
Nuffield Foundation Council on Bioethics, 113
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
structure, 130
Oklahoma, 480
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
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
See also Informed consent
Patient Self-Determination Act, 105, 184, 343, 412, 415
Patriotism, 374
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
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
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 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 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
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
citations to, 269, 270-272, 274-276
consensus in, 246-247
context in evaluation of, 309
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
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
social justice issues in, 247-248
staff functioning, 302-303, 306n.6
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
Public debate
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
government oversight, 95-96
Recombinant DNA technology, 59
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
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
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
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
S
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
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
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
Specialization in medicine, 3, 34, 35, 37, 56
Sperry, Williard, 69
Spina bifida, 319
State governments
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
Superintendent of Belchertown Hospital v. Saikewicz,314, 315-316
Supra-agency ethics commission
action-forcing powers, 21-22, 191
appointment process, 21, 189-190
dissemination of findings, 190-191
educational role, 21
external advisory committee for, 23
government sponsorship, 189
interim operations, 23, 192-193
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
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
Theological thought
basic questions in, 385n.3
in bioethics, 73-74, 134, 383-385
concept of human loyalties in, 377- 379
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
Troeltsch, Ernst, 359, 364, 365
Tuskegee syphilis study, 2, 32-33, 48, 49, 90
U
UNESCO, 108
Uniform Anatomical Gift Act, 480, 481
Uniform Determination of Death, 151
United Nations, 108
United Network on Organ Sharing, 254-255, 258
Utilitarianism (consequentialism), 205-207, 208, 210, 211, 223-224
V
Vaccines, 59
W
Wanglie, Helen, 320
Warnock, Mary, 244
Warnock Committee, 114, 244-245, 258, 258n.3
Watson,James, 63, 78, 433-434, 437, 438, 442, 448
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
Y
Yesley, Michael, 268