Index
in China, 76
in Eastern Europe, 75
morality and fetal tissue research, 7, 215, 220–223, 233–234, 241–243, 251, 252–253, 310, 318
mortality, 71
number of, fetal tissue research and, 223–228, 235–236, 241, 256, 314
other abortifacients, 52, 59, 68–69
RU-486 procedure, 43, 73, 78–79, 310
societal legitimation of, fetal tissue use and, 216, 228–229, 239
U.S. law, 55, 69, 72, 288 n.29
U.S. rates, 52, 82, 217, 236, 237
women's decision, 56, 220–221, 223, 224, 229, 230, 232–233, 235, 236, 239, 241
Abortion controversy
and fetal tissue research, 221, 232, 253
and RU-486, 43, 47, 57, 62, 72–73, 74, 86, 97, 316
and fetal tissue research, 218, 237, 239
Roussel-Uclaf and, 46, 58–59, 65, 74–75, 78
RU-486 boycott threats, 54–55, 58, 67, 69–71, 85, 86
RU-486 opposition, 43–44, 47, 48–49, 53, 54–58, 61, 79, 310, 317
Abortion-rights advocates, 64, 68, 72–73
Accident victims, 222, 225, 229, 233
Adenoviruses, 267
Africa, 71
Agence France Presse, 62–63
Agent Orange, 113
Agrigenetics Company, 160
AIDS (acquired immune deficiency syndrome), 19, 34, 35 n.1,
decision-making process and, 9, 10, 32, 41
research, 15, 20, 135, 137, 142
AIDS activists, 35 n.1
and Bristol-Myers officials, 24–25, 29, 32–33
and early release of ddI, 10, 14–15, 18, 22–23, 24–27, 31–33, 40, 42, 313–314, 316
and public health officials, 10, 17, 19, 20, 32, 34, 36 n.8
AIDS Clinical Trials Group (ACTG)n.11
AIDS Coalition to Unleash Power (ACT UP), 15, 22, 24, 25, 36 n.8
AIDS drugs, 15, 34, 35–36 n.4,
AZT, 10, 20, 23, 24, 26, 29, 31, 32
clinical trials, 10, 12, 15–16, 20, 23, 24, 26, 35 n.1,
early release of dideoxyinosine (ddI), 6, 14, 23, 24–28, 29, 42, 310, 318
Albert Lasker Clinical Medical Research Award, 75
Alberts, Bruce, 128–129, 130, 138, 154
Alliance for Aging Research, 152, 155
Alliance for Life, 70
ALZA Corporation, 84
Alzheimer's disease, 137
American Academy of Pediatrics, 237
American Association for the Advancement of Science, 121
American Civil Liberties Union, 72
American College of Obstetrics and Gynecology, 240
American Fertility Society, 240
American Hospital Association, 328
American Medical Association (AMA), 73, 155, 237, 238
American Psychiatric Association, 9–10
American Society for Artificial Internal Organs, 180
American Society of Law and Medicine, 81
American Society of Nephrology, 180, 181
Anderson, Ephraim S., 276, 278, 290n.44
Anderson, Norman, 109, 134, 138–139, 159
Anderson, W. French, 149–150
fetal tissue transplantation, 216, 217, 234, 242
Animal rights movement, 300
Apollo space program, 159
Arabidopsis thaliana,
Ashby Working Party, 274
Asilomar Conference on Recombinant DNA Molecules, 124, 274–283, 284, 301, 331
decision-making process, 7, 277, 281–282, 290n.44, 292n.58,
participants, 274, 293–298, 291n.55
safety guidelines, 258–259, 268–269, 277–281, 283, 299, 302, 306, 314, 317–318
Assembly of Life Sciences (ALS), 272, 273–274, 283, 288 n.31, 289 n.40
Association of American Medical Colleges, 237
AZT, 10, 20, 23, 24, 26, 29, 31, 32
Bacteria
genetic structure, 106–107, 262
hazards in research, 263, 280, 302
viral infection of, 105, 259, 264
Baltimore, David, 286n.8
and Asilomar conference, 272, 274, 275, 283, 289n.38
and genome project, 140–141, 142, 144, 154
Banta, H. D., 5–6
Baulieu, Etienne-Emile, 49–50, 51, 52, 53, 58, 61, 62, 63–64, 66, 75
Beadle, George W., 261–262, 286n.8
Beckman Foundation, 111
Beckwith, Jonathan, 279–280, 291n.52
Berg, Paul
and Asilomar conference, 269, 272–273, 274, 275, 276, 277, 281, 282, 283, 291n.52,
and genome project, 112, 124, 125, 127–128, 140–141, 154, 161
recombinant DNA research, 265, 266–267, 268, 286n.8, 289nn.37,38
Berkeley National Laboratory, 120–121, 131
Biomedical Ethics Advisory Committee, 253
Biomedical research, 2, 3, 5, 157, 158, 259–261, 287n.25
Biotechnology, 157, 158, 303, 304, 306
Biotechnology Science Coordinating Committee, 136, 284
Birth control pill, 49
controversy over, 43, 46, 48, 52, 59, 60
Black, Francis, 287n.25,
Bleich, J. David, 219, 226, 228
Bodmer, Walter F., 108, 112, 123, 125, 127, 154
Bopp, James, 218, 219, 222, 223, 230–231
Boston,
Boston Globe,
Botstein, David, 108, 111, 124–125, 129, 140–141, 161
Bowen, Otis R., 219
Boyer, Herbert, 269, 270, 271, 276, 289n.38
Bread molds (neurospora), 261–262
Brenner, Sydney, 127, 129, 274, 278, 282, 283, 285 n.7
Bristol-Myers Company, 18, 24–25, 27, 28–30, 32–33, 36n.11
British Society for the Protection of the Unborn, 74
Broder, Samuel, 24
Brookhaven National Laboratories, 155
Bureau of the Budget, 178, 179, 210, 315
Burkitt's lymphoma, 263
Burroughs Wellcome Company, 29
Burtchaell, James T., 218, 219, 221–222, 230–231
Bush, Vannevar, 259
Business Week,
Cahill, George, 125, 127, 130, 147
California, 173
drug regulation, 35–36n.4,
California Association for Research in Astronomy, 110
California Institute of Technology, 108, 110
California Right to Life, 79
contraceptive carcinogenicity, 50, 51, 56
research, 108, 122–123, 287n.25,
viruses and, 263, 265, 266, 268–269, 278
Cantor, Charles R., 106, 113, 121, 128, 129, 154, 160–161, 169–170
Capron, Alexander Morgan, 250, 254n.9,
Carey, James, 188–189
Catastrophic health insurance, 193, 194, 202
Cell,
Centers for Disease Control (CDC), 39, 137
Children's Hospital (San Francisco), 80
Chiles, Lawton, 133, 137–138, 151, 170
China, 45, 61, 64–65, 73, 74, 76, 78
Chronic granulomatous disease, 104
Civil rights movement, 309–310, 327
Clinical trials
AIDS drugs, 10, 12, 15–16, 20, 23, 24, 26, 35n.1,
dideoxyinosine (ddI), 10, 21–22, 26, 27, 28, 31, 35, 36n.11,
fetal tissue transplantation, 234
RU-486, 46, 50, 51–52, 54, 73, 76, 80, 83, 94–95
Cohen, Stanley, 270, 271, 276, 282, 289n.38,
Cold Spring Harbor Laboratory, 100, 266, 267
human genome conference, 123–125, 126, 127–128, 131, 174
Collaborative Research, Inc., 108–109
Color blindness, 102
Comings, David, 115
Committee to Save Unborn Children, 61
Congressional Budget Office, 183, 198
Congressional Budget Reform Act (1974), 183, 198
Congressional Research Service, 183, 314–315
Constantine, Jay, 185, 191, 192, 193, 203, 205–206n.1, 206n.1
Conte, Silvio, 142
Contraceptives, 49, 52, 68, 75, 85
research, 51, 55, 60, 83, 85, 86, 96
side effects, 84
Cooper, Ellen, 19, 25–26, 28, 30, 34
Cost-benefit analysis, 96, 253
Costs, 321
abortion, 44–45
FDA approval procedure, 82–83
human genome project, 112–113, 114, 116, 124, 140, 141, 142–145, 159–162, 163–164, 316, 319
Medicare ESRD program, 195–201, 202–203, 204, 206nn.8 and 9,
risk events, 305
Cowan, Max, 127
Cranston, Alan, 191
Crick, Francis H. C., 104, 127, 260, 285n.7,n.8, 286n.8
Crossen, David, 52–53
Cushing's syndrome, 46, 70, 77, 86–87
Cystic fibrosis, 104
Cytotec, 68–69
Decision making, 2–3, 5, 6, 8, 308–317, 318, 319, 320, 321–322, 329–330
Asilomar conference, 7, 277, 281–282, 299–300, 311, 313, 315–316
early release of ddI, 9, 10, 33–35, 39, 41–42
fetal tissue research, 215–216, 219–220, 251–252, 255–257
human genome project, 99–100, 169
Decorum (Hippocrates), 327
de Gaulle, Charles, 49
Deinstitutionalization of the mentally ill, 5
Delbrück, Max, 105, 285n.7 286n.8
Delegation for Biomedical Research, 118
DeLisi, Charles, 138
and establishment of genome project, 114, 115–117, 119, 121, 128, 134, 147, 149, 153, 160, 169–170, 174–175, 313
and genome project funding, 116, 118, 132
Democracy, 3, 4, 308, 309–310, 321, 326
Deoxyribonucleic acid (DNA)
and cancer, 122
gene mapping, 102–103, 151–152
gene splicing, 105–106, 264, 269, 271, 273
fragment analysis, 111
sequencing, 106–108, 110–111, 113, 114, 115, 123–124, 128, 134, 140, 163–164, 170–171
Department of Agriculture, 156
Department of Energy (DOE), 100
genome project budget, 99, 101, 116, 118, 119, 132, 134, 139, 145, 147, 159–160, 172
genome project initiative, 113–123, 130, 131–132, 137, 149, 155, 156, 162, 170, 173, 174
genome project of, opposition to, 125, 127, 128, 134, 136, 138, 155
joint genome project with NIH, 133, 141, 151, 152, 153, 154, 164, 171
Department of Health and Human Services (DHHS)
and fetal tissue panel, 215–216, 217, 218, 255, 256
fetal tissue research funding ban, 235–238, 241–242, 251
Depo-Provera, 48, 50–51, 59, 82
DeVita, Vincent, 121
Dialysis.
See Hemodialysis
Dideoxyinosine (ddI)
AIDS activists and, 10, 15, 23, 24, 31–33, 310, 313–314, 318
Bristol-Myers and, 24–25, 27, 28–30
clinical trials, 10, 21–22, 26, 27, 28, 31, 35, 36n.11,
early release decision, 6, 7, 10–11, 24–28, 33–35, 38–40, 41–42, 311, 316–317, 320
FDA and, 6, 18, 19, 20, 24, 25–26, 27–28, 30, 33–34, 38, 39, 42, 313
Diethyl stilbestrol (DES), 56
Diffusion-adoption continuum, 5–6
Dingell, John D., 132
Dinkins, David N., 80
Disease
fetal tissue research and, 43, 216, 217, 234, 238
germ theory of, 262
RU-486 treatment applications, 46, 72, 77–78, 86–87
Domenici, Pete V., 118, 119–120, 133, 137, 138, 139–140, 170
Domestic Policy Council, 136
Donis-Keller, Helen, 109, 111, 129
Dor, Xavier, 57–58
Dornan, Robert, 53, 70, 77, 78, 81
Double Helix (Watson), 148
Drosophila,
Drugs.
See also AIDS drugs
clinical trials, 11, 12–14, 36n.6
experimental, 12, 15, 17, 19–20, 21, 23, 35n.1,
regulation, 10–15, 18–19, 23, 30, 32, 35–36n.4,
Duchenne's muscular dystrophy, 104
Dulbecco, Renato, 122–123, 124, 153, 154, 169–170, 265, 289n.37
DuPont de Nemours, E.I., & Co., Inc., 155
Dupree, A. Hunter, 259–260
Dworkin, Roger, 281
Eastern Virginia Medical School CONRAD program, 83, 86
Economic development, 157, 158
EcoRI,
Efficacy
drugs, 11, 12, 15, 18–19, 22, 23
RU-486, 44, 45, 50, 54, 55, 73, 78–79, 81, 84, 95
Eigo, Jim, 15
Eisenhower, Dwight D., 47
Eisenhower, Mamie, 191
Eisenstadt v. Baird (1972), 48
Elderly, 200
Electrophoretic separation, 106, 113
End-stage renal disease (ESRD), 180–181
Congressional entitlement, 7, 185, 187–195, 228, 311, 312, 313, 314, 315, 319
costs of treatment, 195–201, 202–203, 204, 210–211, 213, 313, 319
Gottschalk Committee report on, 178, 179, 181, 197, 206n.4, 212–213, 315
Engelhardt, Tristram, 310
Environmental Protection Agency, 284
Epstein-Barr virus, 263
Ervin, Sam, 193
Escherichia coli
DNA recombination, 262, 268, 269, 270, 273, 276, 277, 278, 280
DNA sequencing, 108
Ethics Advisory Board, 43
Etzioni, Amitai, 272
Eukaryotic cells, 262, 265, 279, 280
Europe, 119
abortion laws, 239
contraceptive research in, 85
human genome mapping in, 129, 147
European Economic Community, 284
European Medical Research Council, 134
European Molecular Biology Laboratory (EMBO), 108, 264
“Every Child a Wanted Child,”
Evolution, 300
Experimental drugs, 12, 15, 17, 19–20, 21, 23, 35,n.1 40, 314
Falmouth conference, 277
Falwell, Jerry, 53
Family Health International, 86
Fauci, Anthony, 15–17, 18, 19, 20, 21, 25, 27–28, 31, 32, 33–34, 36,n.7 313
Federal Insurance Contributions Act (FICA), 198, 200–201
Feinstein, Diane, 79
Fetal tissue research, 78, 251–252, 315, 320
animal studies, 216, 217, 234, 242
donation decision, 225, 226, 227–228, 230–231, 232, 233–234, 236, 252
federal funding ban, 43, 78, 216, 218–219, 226–227, 235–238, 239–240, 288n.29
information to women, 225, 231–233
morality of abortion and, 7, 215–223, 233–234, 251, 252–253, 256, 310, 318
and number of abortions, 223–228, 235–236, 241, 256, 314
public policy and, 234–240, 241–243, 255–257, 310, 311
and societal legitimation of abortion, 216, 228–229, 239
tissue dispositional authority, 229–231
Food and Drug Administration (FDA), 9, 36n.5
Anti-Infectives Advisory Committee, 17, 21, 22, 23
Anti-Viral Products Division, 19
contraceptive approval process, 50, 51, 54, 68–69, 82–83
drug regulation, 10, 11, 12–13, 14, 18, 19, 79
early release of ddI, 6, 24, 25–26, 28, 29–30, 33–34, 38, 39, 42, 313
parallel track protocol, 15, 16, 17, 18–20, 23, 25, 31, 40
and RU-486, 45, 46–47, 53, 54, 70, 73, 76–78, 81, 83, 86, 94
Food and Drugs Act (1906), 11
Food, Drug, and Cosmetic Act (1938), 11
Kefauver amendments (1962), 11, 36n.5
Ford, Wendell H., 118
Ford Foundation, 49
abortion controversy in, 62, 63
coercion of Roussel, 46, 65–67
contraceptive law, 49
and development of RU-486, 50, 52, 57
RU-486 approval, 60, 64–65, 69, 70, 83, 94, 98
RU-486 availability in, 43, 44, 45, 61, 68, 73, 76
Fredrickson, Donald, 111, 119, 125, 126
French Family Planning Association, 64
French Movement for Family Planning, 63
Friends of the National Library of Medicine, 143
Froelich, Edwin, 149–150
Fruit fly (Drosophila), 171, 261, 273
Fuji Photo Film Company, Ltd., 108
Fullerton, William D., 185, 188, 190, 191, 195, 205–206n.1
Fund for the Feminist Majority, 76
Funding
abortion research, 70, 72, 78, 288n.29
contraceptive research, 60
fetal tissue research, 217, 221, 228–229, 231, 232, 235, 236, 238, 256–257, 288n.29
fetal tissue research, federal funding ban, 43, 216, 218–219, 226–227, 235–238, 239–240, 288n.29
human genome project, 99, 101, 112–113, 118, 119, 121, 126, 140, 141, 142–147, 171–172
kidney research and treatment, 180–181
scientific research, 169, 259–260
General Accounting Office (GAO), 183
“General altruism,”
Genetic discrimination, 148, 159
Genetic disease, 104, 105, 150, 157
Genome Corporation, 129
Germ theory of disease, 262
Giglio, Camille, 79–80
Gilbert, Walter
and genome project, 111–112, 124, 127–128, 129, 130, 140–141, 147, 154, 169–170
Glasow, Richard, 43–44, 54, 55, 56, 59, 60, 69, 74–75, 79
Glazer, Shep, 187–189, 194, 313
Gordon Conferences, 107, 112, 114, 289n.37
on nucleic acids, 270–272
Gottschalk, Carl W., 177, 179, 205–206n.1
Gottschalk Committee, 180, 182
Report of the Committee on Chronic Kidney Disease, n.4,
Gough, Mike, 113–114
Gramm-Rudman-Hollings deficit targets, 143
Great Instauration of 1940, 259–260
Greenhouse, Steven, 58
Griswold v. Connecticut (1965), 48
GynoPharma, Inc., 59–60, 83, 85, 86
Handler, Philip, 272, 283, 289n.40
Harkin, Tom, 142
Hartke, Vance, 191, 192, 193, 195, 196–199, 201, 203
Harvard Medical School, 300
Harvard University, 182
Hatch, Orrin G., 149
HCG vaccine, 86
Health care technology, 3
Health and Environmental Research Advisory Committee (HERAC), 114–115, 116, 117, 121, 160
Heart Disease, Cancer, and Stroke Amendments (1965), 181
Hemodialysis, 177–178, 180, 190, 197, 319
demonstration in Congress, 187–189
Gottschalk Committee and, 179, 181–182, 206n.4
Medicare coverage, 198–199, 200, 205, 209–210, 211, 212–213, 214
Hennepin County Hospital (Minneapolis), 182
Herrington, John S., 114
Hippocratic oath, 326–327
Hoechst A.G., 46, 57, 58–59, 61, 63, 64, 66–67, 69–70, 71, 75–76
Hoechst-Roussel Pharmaceuticals, Inc. (HRPI), 68, 94
Hoffman, Max, 109–110
Hoffman Foundation, 109–110, 112–113
Holland, 177
Homicide victims, 222, 225, 228, 229, 233
Homosexuality, 9–10
Hood, Leroy, 111, 112, 118–119, 126, 128, 129, 140–141, 154, 160, 162, 169–170
Howard Hughes Medical Institute (HHMI), 3, 101, 108–109, 111, 125–126, 127, 128, 130, 156
Hughes, Howard, 126
Human Cell Biology Steering Committee (HCBSC), 265, 268, 274, 286n.15
Human Fetal Tissue Transplantation Research (NIH), 234–235
Human Gene Mapping Library (HHMI), 126
Human genetics, 102, 104, 107, 150
Human genome project, 6–7, 99–102, 152–155, 157–159, 169–172, 173–175, 312, 313, 315
costs of, 112–113, 114, 116, 124, 140, 141, 142–145, 159–162, 163–164, 316, 319
DOE plan, 113–123, 130, 131–132, 137, 149, 155, 156, 162, 170, 173, 174
DOE plan, opposition to, 125, 127, 128, 134, 136, 138, 155
ethical and social issues, 147–151, 164, 171, 174, 318
genetic linkage mapping, 103–104, 108, 111, 121–122, 123–124, 126, 127, 130, 140, 162
NIH-DOE joint project, 133, 138, 140–141, 142–147, 151–152, 153, 154, 164, 170, 171
NIH plan, 108, 125, 130, 134–137, 156, 173
NRC report on, 128–31, 133, 141, 144, 145, 152, 154, 161, 170
OTA report on, 131–133, 159, 162, 170
physical mapping, 107, 111, 113, 114, 115, 123–124, 128, 130, 162, 170
public and, 152, 154–155, 171, 174–175, 316, 317, 331
Santa Cruz plan, 109–113
scientific community and, 123–128, 154–155, 171–172, 174
Human immunodeficiency virus (HIV), 10, 22
Humphrey, Hubert H., 143
Huntington's disease, 104, 106, 150
Hyde Amendment, 242
Ice-minus bacteria, 138
Immigration, 9–10
Immunosuppressive drugs, 178
Incrementalism, 312–313
India, 75
Industrial Biotechnology Association, 138
Infertility, 86–87
Institute of Medicine (IOM), 3, 94, 174, 177, 193, 271, 288n.31
Institutional review boards, 231, 234, 288n.29
Internal Revenue Code, 183
International AIDS Conference, 16, 24
International Convention on Patents, 74
International Right to Life Federation (IRLF), 70–71
Intrauterine device (IUD), 52, 82, 83, 84, 85, 95
Investigational new drug (IND) application, 12, 13–14, 54, 94–95
treatment IND, 14, 19, 24, 26, 27, 30, 33
In vitro fertilization, 43
Ireland, 68
Issues in Science and Technology,
Italy, 74
Jackson, Henry M., 181, 206n.2
Ministry of Education, 156–157
Science and Technology Agency, 108, 156–157
Johnson & Johnson Products, Inc., 86
Judson, Horace Freeland, 285n.7
Karølinska Hospital (Stockholm), 74
Karyotyping, 102–103
Kass, Leon, 266–267
Katz, Jay, 254n.10
Keck Foundation, 110
Kefauver amendments (1962, Food, Drug, and Cosmetic Act), 11, 36n.5
Kennedy, Edward M., 137, 138, 185, 186
Kerry, John, 149
costs of treatment, 195–201, 204, 210–211, 213–214
Gottschalk report on, 178, 179–180, 181, 197, 206n.4,
Medicare coverage, 176, 178, 179, 187–195, 201–202, 205, 206n.6,
research, 178, 180–181, 201–202
Kidney Disease Control Program (KDCP), 178, 180
Kidney transplantation, 177, 178, 182, 189
Gottschalk Committee and, 179, 181, 206n.4
Medicare coverage, 198–199, 200, 205, 209–210, 212–213
King, Martin Luther, Jr., 327
Kingsbury, David, 128, 136–137
Kirschstein, Ruth, 128, 131, 134, 135, 140, 141, 142, 144, 146, 147, 149–150
Kissinger, Henry A., 174
Korean War, 177
Kornberg, Arthur, 286n.8
Kountz, Samuel, 193, 196, 197, 201, 206n.7
Kourilsky, Philippe, 258, 282, 284n.1
Krimsky, Sheldon, 265, 271, 292n.58
Lac operon, 279–280
Landers, Ann, 60
Lederberg, Joshua, 262, 278, 282, 286n.8
Lewis, Andrew M., 267–268, 269, 278, 279, 287n.24
Lewis, Herman, 265, 268, 272, 274
Liability
and contraceptive development, 55, 83–84, 95
and recombinant DNA research, 281, 306
and RU-486, 55–56, 81, 82, 84, 85, 86, 96
Library of Congress, 183
Lincoln, Abraham, 135
Long, Russell B., 184–185, 186, 191, 192, 193, 194, 195, 199, 200, 203–204
Los Alamos National Laboratory, 114, 115, 120, 174–175
Los Angeles Times,
Lujan, Manuel, 118
Luria, Salvatore, 105, 285n.7, 286n.8
Lustinger, Jean-Marie (archbishop of Paris), 59
McClintock, Barbara, 261, 286n.8
McCusick, David, 205–206n.1, 206n.8
McDonnell Foundation, 128
McKusick, Victor A., 123–124, 126, 129, 131
Magnuson, Warren G., 181
Manchester Guardian,
Mason, James O., 16, 17, 18, 225–226, 236–237
Maternal serum alpha-fetoprotein test, 5
Matsui Knowledge Industries, 108
Maxam, A. M., 106–107
Medicaid, 176, 180, 183, 186, 189, 214, 329
Medical Advisory Board, 126
Medical innovation, 5–6
Medical Research Council (U.K.), 264, 274
Medicare, 329
Congress and, 183, 186, 190, 192, 202
kidney disease coverage, 176, 178, 179–180, 189, 193, 200, 202, 204, 205n.6,
kidney treatment costs, 195, 197, 203, 210–211, 214
Medicare and Medicaid: Problems, Prospects, and Alternatives (Constantine and Fullerton), 185
Meningioma, 46
Mendel, Gregor, 259
Mendelian Inheritance in Man, 123, 126
Mendelsohn, Mortimer, 113, 117
Mertz, Janet E., 265, 266, 269
Methodology, 3
Michelin, 69
Mifepristone, 44
Mikulski, Barbara A., 150
Mills, Wilbur, 183, 184, 188, 189, 190, 194, 195, 199, 200, 206n.7
Mishell, Daniel, Jr., 51–52
Molecular biology, 112, 123, 125, 127, 143
development of, 104–105, 259–260, 261
and gene mapping, 102, 103, 106, 107
and recombinant DNA research, 263–265, 267, 279, 291n.55
Mondale, Walter F., 206n.3
Mongan, James J., 185, 191–192, 193, 198–199, 203, 205–206, 206n.8
Moral Majority, 71
Morgan, Thomas Hunt, 261, 286n.8
Mortality
abortion and pregnancy, 71
ddI, 40
kidney disease, 196
Mouse genome, 171
Moynihan, Daniel Patrick, 185
Najarian, John S., 182, 206n.3
Nathans, Daniel, 129, 267, 271, 272, 286n.8
National Abortion Rights Action League (NARAL), 64, 72
National Academy of Engineering, 288n.31
National Academy of Sciences (NAS), 177, 288n.31
and human genome project, 112, 127
and recombinant DNA research, 271, 272, 273–274, 276, 281, 289n.38
National AIDS Program Office (NAPO), 17–18, 26
National Association of Patients on Hemodialysis (NAPH), 187
National Cancer Institute (NCI), 14, 137, 265, 268, 279, 287n.25
National Center for Biotechnology Information, 143
National Center for Human Genome Research, 100, 150, 152
National Center for Nursing Research, 150
National Committee to Review Current Procedures for Approval of New Drugs for Cancer and AIDS, 24
National Conference of Catholic Bishops, 222
National health insurance, 185, 189, 194, 202, 312
National Health Insurance Partnership Act (1971), 186
National Heart Institute, 178
National Institute on Aging, 137
National Institute of Allergy and Infectious Diseases (NIAID), 15, 17, 20, 137, 178
National Institute of Arthritis and Metabolic Diseases, 178, 179
National Institute of General Medical Sciences (NIGMS), 112, 121, 140, 141, 142, 143, 145
National Institute of Mental Health, 137
National Institute of Neurological and Communicative Disorders and Stroke, 137, 216
National Institutes of Health (NIH)
abortion controversy and, 43
AIDS drug clinical trials, 16, 36n.11
Biohazards Committee, 287n.24
Director's Advisory Committee, 134–135, 140, 218, 234–235
and DOE genome project, 117, 119, 121, 126–127, 131–132, 134, 137, 153, 155
and drug parallel track, 16, 17, 19
and early access to ddI, 25, 26, 27–28, 31
and fetal tissue research, 215–216, 217, 218, 222, 234–235, 236
genome project budget, 99, 101, 112, 132, 139, 140, 141, 142–147, 158, 172
genome project development, 108, 125, 130, 134–135, 156, 173
and genome research ethics, 149–151, 171
joint genome project with DOE, 133, 138, 140–141, 151–152, 164, 170
kidney disease research, 178, 180–181, 201–202
Office of Human Genome Research, 148
and recombinant DNA, 264–265, 267–268, 274, 302
Recombinant DNA Advisory Committee, 277, 283
research funding, 260, 270, 288n.29
and RU-486 research, 77
National Kidney Foundation, 179, 180, 182, 188, 189, 191, 193, 196, 197, 201, 210
National Library of Medicine (NLM), 143
National Medical Care, Inc., 182
National Organization for Women (NOW), 72–73
National Organ Transplant Act (1984), 218, 227
National Policy Board on the Human Genome, 137
National Research Council (NRC), 100, 128, 162, 273–274, 288n.31
Committee on Mapping and Sequencing the Human Genome report, 128–131, 133, 141, 144, 145, 152, 154, 161, 170
National Right to Life Committee (NRLC), 47, 54–56, 57, 60, 61, 62, 67, 76, 78
National Right to Life News,
National Science Foundation (NSF), 108, 119, 136–137, 156, 170, 265, 268
Nature,
Nazi Germany, 58–59, 70, 75, 177, 223, 327
Netherlands, 74
New drug application (NDA), 12, 13, 14, 30, 94, 95
New England Journal of Medicine,
New Republic,
New Scientist,
Newsweek,
New York City, 80–81
New York Times,
Nixon, Richard M., 176, 185–186, 187, 195, 201, 210
Norplant, 81
Nouvel Observateur,
Novick, Richard P., 274, 275, 277
Nuclear power, 303, 304, 305–306
Nuclear weapons, 119
Nucleic acids, Gordon Conference on, 270–272
Nuremberg Code, 327–328
Obesity, 46
Occupational Safety and Health Administration, 281
O'Connor, Sandra Day, 47
Office of the Assistant Secretary of Health (OASH), 201
Office of Management and Budget (OMB), 116, 119, 121, 136, 139, 144, 156, 164, 170, 174
Office of Science and Technology Policy (OSTP), 136, 155–157, 178, 210
Office of Technology Assessment (OTA), 100, 183, 314–315
and genome project costs, 141, 143, 159, 161, 162
and genome project establishment, 113–114, 118, 129–130, 152, 154, 173, 174
report on genome project policy, 131–133, 159, 162, 170
Olson, Maynard V., 106, 113, 130, 151–152, 154
Operon, 264
Oregon, 81
Organ transplantation, 222, 225, 227, 228
Orphan drugs, 96
Ortho-Novum, 52
Ortho Pharmaceutical Corporation, 52, 84, 86
Ovral, 52
Pancreatitis, 40
Parallel track protocol, 14–18, 313, 316
AIDS activists and, 14–15, 22–23, 31–32
and clinical trials, 10, 15–16, 21–22, 27–28, 38, 39–40
early release of ddI and, 6, 10, 18, 24–25, 26, 30
evaluation of, 28, 34–35, 40, 42
FDA and, 15, 16, 17, 18–20, 23, 25, 31, 33–34, 40
research community and, 20–22, 31
Parkinson's disease, 43, 216, 217, 234, 238
Pasteur, Louis, 262
Pasteur Institute, 264
Patent protection, RU-486, 46, 64–65, 74, 76, 82, 87
Pathogens, 263, 264, 268, 278, 280, 290n.44,
Patients, 328–329
Peer review, 234
Penicillin, 213
Pentamidine, 20
Pepper, Claude, 143
Perrier, 69
Perutz, Max, 285n.7
Peter Bent Brigham Hospital (Boston), 180, 182
Phage research, 105, 265, 273, 276, 278
Pharmaceutical industry
constraints on RU-486 development, 47, 59–60, 81–86, 317
and early release of ddI, 36n.8
and Medicare drug coverage, 194
Physicians
and early release of ddI, 25, 27, 29, 34, 39
and human genetics, 150
and kidney disease treatment, 182
in policy decisions, 326–327, 328–329, 330
and RU-486 marketing, 46, 54, 64, 76, 77, 84
Planned Parenthood, 47, 56, 57, 60, 64, 87
Plante, Charles L., 180, 182, 188, 191, 193, 205–206n.1
Plasmids, 269–270, 271, 273, 276, 278
Pluralism, 309–310
Pneumococcus, 259
ESRD program, 177, 202, 203, 212–214
fetal tissue transplantation research, 215, 221, 223, 234–238, 239, 249–250, 251, 252–253, 255–256
human genome project, 153–155, 159, 162, 163, 169, 174, 316
public and, 2, 5, 8, 309–310, 312, 315, 316, 317–318, 320, 321–322, 325–331
recombinant DNA research, 277, 284, 315
Poliomyelitis vaccine, 217, 265–266, 268
Polkinghorne Committee (U.K.), 232–233, 239
Polycystic kidney disease, 104
Population Council, 46, 54, 55, 57, 78, 86
Porton Company, 136–137
Postmarketing studies, 13
Premarketing approval, drugs, 12–13
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 250
President's Task Force on Regulatory Relief, 13
Press, Frank, 128
Project Inform, 22
Prokaryotic cells, 262, 278, 279, 280
Prostaglandin, 44, 45, 68, 73, 78, 94
and RU-486 effectiveness, 50, 51, 52, 54, 95
and U.S. trials of RU-486, 46, 79, 83
sequencing, 106
Psychotropic drugs, 300
Public
and ESRD program, 210
and human genome project, 152, 154–155, 171, 174–175, 316, 317, 331
involvement in policymaking, 2, 5, 8, 309–310, 312, 315, 316, 317–318, 320, 321–322, 325–331
and recombinant DNA research, 257, 279, 280–281, 300–301, 302–307, 311
and RU-486, 45–46, 56, 60, 61, 62, 66, 71–72, 318
and scientific research, 270, 272, 279, 300, 306
Public Health Service (PHS), 137, 260
and AIDS, 9–10
and early release of ddI, 16, 17–18
and fetal tissue research, 241
and human genome project, 142
and kidney disease treatment, 178, 180, 181, 201–202, 210
Public Health Service Act (1944), 181, 191
Puerto Rico, 48
Radiation effects, 119
Raub, William F., 235
and genome research budget, 117, 119, 132, 141, 143–144
Recombinant DNA research, 103, 260
Asilomar Conference on, 7, 258–259, 268–269, 274–283, 284, 292n.58,
potential hazards of, 267–268, 271–272, 280, 299, 304, 305–306
public and, 257, 279, 280–281, 300–301, 302–307, 311
safety guidelines, 279, 281, 283–284, 288n.29,
Regional Medical Program, 178, 180–181
Regulation
contraceptive development, 47–48, 51, 54, 55
drugs, 10–15, 18–19, 23, 30, 32, 35–36n.4,
fetal tissue research, 53, 78, 217, 230, 234, 235
recombinant DNA, 281, 284, 302, 306, 318
“Reproductive Health Technologies Project,”
cancer, 108, 122–123, 287n.25,
contraceptive, 51, 55, 60, 83, 85, 86, 96
fetal tissue, federal funding ban, 43, 216, 218–219, 226–227, 235–238, 239–240, 288n.29
kidney disease, 178, 180–181, 201–202
on policymaking, 317–320
public and, 270, 272, 279, 300, 306
recombinant DNA, 279, 281, 302, 306
RU-486, 77–78
Restriction enzymes, 103, 264, 269, 271
Restriction fragment length polymorphisms, 170
Retinoblastoma, 104
Retroviruses, 263
Rhône-Poulenc, Inc., 67
Ribonucleic acid (RNA), 105, 106, 263, 271, 273
Risk-benefit analysis, 13, 234
Risk perception, 302–307, 317–318
Robertson, John A., 219, 225, 227, 230–231, 253
Robins, A. H., Company, Inc., 48, 83
Robinson, Daniel N., 218, 219, 229
Roblin, Richard O., III, 272–273, 274, 283, 289nn.37,
Rockefeller Foundation, 58
Rogers, Michael, 277–278
Rolling Stone,
Roman Catholic Church, 49, 63, 64, 65, 67
Roosevelt, Franklin D., 135, 259
development of RU-486, 50, 52, 94
and international market, 73–75, 76
return of RU-486 to market, 65–66, 67
threats against, 46, 57–60, 61, 62–63, 64, 65, 69–70, 71
and U.S. market, 46, 68, 73, 75, 76, 78, 80, 87, 98
Ruddle, Francis, 114, 126, 128, 129
RU-486, 7–8, 94–96, 97–98, 316
anti-abortion opposition to, 43, 54–58, 76, 310–311, 317, 318
black market, 68
boycott threats against, 54–55, 69–71, 74, 96
commercial interest in, 51–53
corporate withdrawal of, 58–63, 76
efficacy, 44, 45, 50, 54, 55, 78–79, 84, 95
French government's coercion of Roussel, 63–67
industry constraints, 47, 59–60, 81–86, 317
international availability, 73–75
non-abortion treatment applications, 46, 72, 77–78, 86–87
public and, 45–46, 56, 60, 61, 62, 66, 71–72, 318
side effects, 44, 52, 54, 56, 61, 72, 77, 78, 79
U.S. market and, 6, 43, 71–73, 75–81, 86–87, 97
Sachs, Linda, 80–81
Safety
contraceptives, 48
Sakiz, Edouard, 49, 50, 57–58, 59, 61, 63–64, 66, 67, 73, 81
San Francisco General Hospital, 80
Sanger, Frederick, 106, 108, 111
San Jose Mercury,
Sarcoma, 263
Schering A. G., 52
Scheuer, James, 51
Schreiner, George E., 179, 180, 182, 188, 189, 191, 192, 193, 205–206n.1
Schroeder, Patricia, 72
Schwartz, David C., 106, 111, 113
Science
politics and, 314, 315–316, 317, 320, 322
public and, 300–301, 309–311, 325–326, 329–331
Science,
Science and Babies (IOM), 94
Science for the People, 279, 306
Scientific community
and early release of ddI, 20–22, 31
and human genome project, 123–128, 154–155, 171–172, 174
and recombinant DNA, 299–300, 302, 317–318
Scientist,
Scorsese, Martin, 63
Scribner, Belding, 177, 180, 181, 197, 201, 206n.2
Scriver, Charles, 111, 125, 126
Searle, G. D., & Company, 59, 60, 68–69, 83, 84
Seattle Artificial Kidney Center, 181–182
Seiko Instruments, Inc., 108
Sexually transmitted diseases, 9
Shatkin, Aaron J., 274, 275, 278–279
Shaw, George Bernard, 290n.44
Shultze, Charles L., 179
Shumway, Norman Edward, 193
Sickle cell anemia, 105, 150, 157
Side effects
contraceptives, 84
RU-486, 44, 52, 54, 56, 61, 72, 77, 78, 79
Sikorsky, Gerry, 55–56
Simian virus 40 (SV40), 265–266, 267, 268, 269, 278
Singer, Maxine F., 125, 266, 271, 272, 274, 278, 283, 288nn.31,
Sinsheimer, Robert L., 109, 110, 111, 122, 124, 153, 169–170, 279
Sloane, Kay, 206n.2
Sloan Foundation, 100
Smith, David, 113, 114, 117, 118, 121, 125, 127, 313
Social Security Act (1935), 183, 187
Social Security Administration (SSA), 192, 210
Bureau of Health Insurance, 179–180, 185, 200, 201
Office of the Actuary, 198, 199
Social Security Amendments (1972), 198
Congressional deliberation, 187–195, 201–202, 210, 213
cost estimates, 195–201, 202–203, 204, 210–211, 213–214
Section 299I (kidney disease provision), 7, 176, 178, 182–187, 205, 206n.6,
Somatic cell hybridization, 102, 103
Soviet Union, 75, 115, 291n.55
Spain, 61
Special interest groups, 6, 306
“Specific altruism,”
Spitz, Irving, 55
“Statement on a Patient's Bill of Rights” (AHA), 328
States
drug regulation, 11, 35–36n.4,
fetal tissue research restrictions, 217, 231, 242
kidney programs, 181
Sterling Drug, Inc., 51–52
Suicide, 225
Sulfanilamide, 11
Sullivan, Louis W., 70, 152, 235–236, 237, 238, 239–240
Sununu, John H., 70
Superior Oil Company, Inc., 110
Suramin, 40
Sweden, 51
Sweig, Neil, 84–85
Syntex Corporation, 83
Szilard, Leo, 285n.7
Szybalski, Waclaw, 282
Tatum, Edward L., 261–262, 286n.8
Tay-Sachs disease, 150
Three Mile Island, 305
Time,
Tocqueville, Alexis de, 310
Toulmin, Stephen, 250–251
Tower, John G., 181
Treatment IND, 14, 19, 24, 26, 27, 30, 33
Trivelpiece, Alvin, 114–115
Uniform Anatomical Gift Act (UAGA), 217, 230, 231, 232, 242
United Kingdom, 213
and Depo-Provera, 51
and fetal tissue research, 232–233, 239
and recombinant DNA research, 264, 274, 284
United Nations Fund for Population Activities, 73
United States, 11, 83, 108, 148
abortion rate, 52, 82, 217, 236, 237
and contraceptive innovation, 47–48, 50, 51, 55
fetal tissue research ban, 43, 78, 216, 218–219, 226–227, 235–238, 239–240, 288n.29
and human genome project, 156, 157, 158–159
RU-486 import ban, 6, 43, 59, 77–78, 97–98
RU-486 market, 52–53, 61, 62, 85, 86
RU-486 potential availability, 45–47, 62, 68, 71–73, 75–81, 85, 86–87, 94
U.S. Agency for International Development (USAID), 50, 86
U.S. Congress, 51
and early drug release, 17, 19, 29
and fetal tissue research, 219, 227, 235, 239–240
House Ways and Means Committee, 187–190, 194–195, 198, 213, 313
and human genome project, 6–7, 114, 117–120, 128, 130, 131, 137–138, 151, 152, 153, 154, 156, 164, 316
human genome project funding, 101, 112, 133, 139–140, 142–143, 146–147, 172
kidney disease Medicare entitlement, 176–177, 178, 182–185, 186–195, 198–199, 200–201, 202, 203, 210, 213, 315, 319
and recombinant DNA research, 259
and RU-486, 47, 54, 55–56, 70, 73, 77, 78, 96
and science, 148, 260, 314–315
Senate Finance Committee, 190–194, 198, 204
U.S. Constitution, 48, 72, 117, 183, 260, 310
U.S. News and World Report,
U.S. Supreme Court, 48, 72, 217, 228
University of California, 112–113, 114, 120
University of California at Los Angeles, 148
University of California at San Francisco, 80
University of California at Santa Cruz (UCSC), 100, 109–110, 111, 112–113, 124
University of Colorado, 236
University of Minnesota, 182
University of Southern California (USC), 46, 54, 78–79
University of Washington, 181–182
Upjohn Company, 50, 51, 52, 54, 55, 82, 83
Vaccine development, 5
Valine, 105
Van Buren, Abigail, 60–61
Var, Le,
Veterans Administration (VA), 177–178, 181, 210
Village Voice,
Virology, 264–265
Viruses, 262–263
and cancer, 263, 265, 266, 268–269, 278–279
hazards in research, 263, 267–268, 278–279, 287n.25
Vocational Rehabilitation Program, 180–181
Warner-Lambert Company, 83
Washington Post,
Washington Times,
Washington University, 106
Watson, James D.
DNA research, 104, 112, 127, 260, 285n.7, 286n.8
and establishment of genome project, 118, 124, 126, 127–128, 129, 140–141, 142, 144, 147, 154, 170
and ethical implications of DNA manipulation, 148–149, 174, 175, 318
as head of genome project, 141–142, 151, 152, 153, 161
and recombinant DNA controversy, 267, 272–273, 278, 282, 287n.25
Wattleton, Faye, 68
Webster v. Reproductive Health Services (1989), 72, 74
Weicker, Lowell P., Jr., 142
Weingart Institute, 108
White, Ray, 109, 113, 125–126, 128, 129
Willke, John, 53, 62, 67, 76, 85
Windom, Robert E., 216, 218, 229, 234, 243
Wolfe, Sidney, 24
Wolkstein, Irwin, 185, 191, 205–206n.1
Women
abortion decision, 56, 220–221, 223, 224, 229, 230, 232–233, 235, 236, 241
abortion opponents and, 43, 57, 59, 63, 64
advocacy groups, 55, 57, 85, 87, 309–310, 327
contraceptive development and, 47, 48, 55–56, 59
fetal tissue donation decision, 225, 226–228, 229–230, 231, 232–233, 234, 236, 252, 253
pregnancy mortality, 71
in RU-486 studies, 44, 50, 74, 78–79, 80
RU-486 use, 45, 66, 68, 73, 75, 84, 94, 96
Women and Health,
Wood, Francis Aloysius, 137–138
World Congress of Gynecology and Obstetrics, 63
World Health Organization (WHO), 51, 54, 65, 71, 73, 83, 86, 94
Wyeth Laboratories, Inc., 52
Wyngaarden, James B., 216
and establishment of genome project, 112, 128, 129–130, 131, 142, 153, 170
and genome project funding, 134, 135–136, 139–140, 141, 144–145, 146–147
Yale University, 236
Yard, Molly, 72
Yeast, DNA mapping, 106, 109, 113, 162, 171
Young, Frank, 51
and ddI early release, 10, 13, 16, 18–19, 25, 26, 27–28, 30, 32, 33–34, 36n.8
Zinder, Norton D., 151, 153, 272–273, 274
ZK 98.299, 52
ZK 98.734, 52