Index

A

Abortion, 32 , 50 , 54 , 61 , 64 n.2, 66 nn.22,25, 67 n.24, 127 .See also Privacy

Actuarial fairness, 112

Affirmative action, viii , 35 –36

African-Americans, 32 , 39 , 42 –43, 52 , 157 . See also Race

Agich, George, 145 , 152 nn.11, 15

Aldhous, P., 90 n.17

Allen, D. B., 132 n.16

Altman, Lawrence, 75

American Eugenics Society, 20

American Medical Association, position on abortion, 66 n.25

Americans with Disabilities Act (ADA), 62 , 63

Anderson, C., 89 n.5

Andrews, Lori B., ix , 64 nn.1,3, 67 n.28, 68 n.41, 72 n.71, 73 n.79, 74 n.97

Annas, George, ix , 89 n.7, 90 n.14, 90 n.21

Antonarkakis, S. E., 131 n.2

Applebome, P., 45 n.12

Arthur, Chester A., 36

Artificial hearts, 133 ff., 137 , 150

Attanasio, John B., 152 n.10

Avery v. Country of Burke , 66 n.19

B

Bacon, Francis, 1 , 13 nn.1,2

Bailey, H. T., 109 n.1

Banking gene samples, ix , 76 ff., 164 , 165 ;

proposed rules, 85 ff..

See also Genetic testing; Privacy

Baram, M., 70 n.61

Behavior, genetic determinants of, 154 ff., 158 ff.

Bender, M. A., 168 n.14

Berg, Paul, 73 n.96

Bergsma, Daniel, 45 n

Biagioli, M., 45 nn.3,6

"Big science," viii , 1

Billings, Paul R., 56 , 70 n.54

Bishop, Jerry E., 29 n.25

Blood as inheritable essence, 15

Blood group polymorphisms, 155 –156

Bohemians, 17

Bok Sissela, 65 n.15

Bonnicksen, Andrea, 152 n.9

Boorse, Christopher, 132 n.15

Bowman, James, 70 n.62

Brahams, Diana, 167

Brennan, Troyen, 151 n.8

Brennan, William, 70 n.64

Bridges v. California , 71 n.64

Brown, Stephen L., 168 n.17

Buck v. Bell , 18 , 27 n.7

Burleigh, Michael, 45 n.6

Burstin, Helen, 151 n.8

Bush, George, 37

C

Callahan, Daniel, 152 n.13

Canadian health care model, 121 , 144 , 150

Caplan, Arthur L., viii , 44 n.2, 45 nn.3,4,5,6,7

Capron, Alexander M., 2 , 13 n.4, 73 n.86

Carter, Jimmy, 36 –37

Castii Connubii , 28 n.15

Children, 9 , 10 , 21 , 25 . See also Genetic testing; Prenatal testing

China, 19

City of Akron v. Akron Center for Reproductive Health , 69 n.52

Clark, J. T. R., 68 n.48

Clifford, K. A., 131 n.4

Cohen, G. A., 132 n.13

Commission of the European Communities, 19 –20, 27 n.11, 28 nn.22,23

Conceptus, status of, 48 –49

Constitutional decisions regarding reproduction, 18 , 52 ff., 58 , 78

Cook-Deegan, Robert, 3 , 13 n.6

Cooley's anemia, 63

Counseling, need for, 164 , 165

Crime, 15 , 32

"Criminal chromosome," 32

Curie, Marie, 18

Curlender v. Bio-Science Laboratories , 61

Cystic fibrosis, 70 nn.55,58, 144

D

Damme, C., 68 n.46

Daniels, Norman, ix –x, 131 –132 nn.1,10,14,19, 143 , 147 , 148 , 152 nn.14,17,18

Darwin, Charles, 15

Davenport, Charles B., 16 , 17 , 27 n.5

Davis, Joel, 28 n.17, 151 n.1

Davis, Jonathan, 17

Deebs, S. S., 167 n.10

Democracy and eugenics, 21 –22

DeNicola, Daniel R., 145 , 152 nn.12,15

Depression, 159

Diabetes, 57 , 105

Difference:

in ethnic groups, 155 –158;

genomic influences in, 7 ;

genomic variation, 110 ;

group and individual, 33 –34, 155 ff.;

nature and meaning of, 1 ff., 8 ;

shared genomic identity, 8 , 34 , 36 , 40 ;

social consequences of, 159 ff.

Disabled rights, 19 , 62 –63, 166

Disease:

environmental contribution to, 164 –165, 166 –167;

genetic contributions to, 154 , 156 ;

genetic predisposition to, 21 , 63 , 82 –83, 154 ;

mass screening programs, x , 32 , 53 –54, 163 –164;

prediction, 82 , 110 ;

purposes of, 10 ;

responsibility for, x , 111 , 127 ff., 130 –131;

and standards of normalcy, 122 , 143 .

See also Cooley's anemia; Cystic fibrosis; Depression; Diabetes; Down's syndrome; Duchenne muscular dystrophy; Heart disease; High blood pressure; Huntington's chorea; Hypothyroidism; Phenylketonuria (PKU); Sickle cell anemia; Syphilis; Tay-Sachs; Thalassemia

DNA identification, 79 ff.

DNA fingerprinting, 79 ff., 89 n.13

Dohernwend, B. P., et al., 167 n.12

Down's syndrome, 25 , 47 , 104

Duchenne muscular dystrophy, 101

Duster, Troy, 45 n.10

Dworkin, Ronald, 122

E

Economic incentives to eugenics, 20

Edwards v. California , 71 n.68

Elias, Sherman, 90 n.21

Embryo:

biopsy, 53 ;

protection of, 48 , 49 ;

rights of, 66 n.16, 137 ff.;

testing, 47 –48;

use, 47 –48

Employment:

discrimination, 26 , 55 , 56 –67, 70 n.60;

testing requirements, 26 , 62 –63, 164 , 165

Engelhardt, H. Tristam, Jr., 132 n.9

Enhancing traits, 120 ff., 130 , 141 , 164

Environmental effects in disease, 20 , 164 –165, 166 –167

Eugenics:

barriers to revivals, 18 –26;

in China, 19 ;

and crime, 15 , 32 ;

defined, 15 , 153 ;

economic incentives to, 52 ;

in Europe, 15 ;

fear of revival, 18 –19, 23 –24, 26 , 30 ;

history of, 14 –15;

"homemade," 25 ;

and human genome project, viii , 143 , 164 –165;

negative, 150 –151;

purposes, 52 , 153 –154;

in Singapore, 19 ;

social applications, 16 ff., 32 ff., 164 , 165 ;

and sterilization, 31 , 52 , 54 ;

undesirable traits defined, 16 ;

in United States, 8 , 15 , 17 , 18 , 20 –21, 28 n.14, 33 .

See also Nazi Germany

European Commission Report, 19 –20, 22 –23, 28 n.22

European Parliament, 22 , 24 , 28 nn.16,18,20,24

Evolutionary history, 153 –154, 163

Experimentation, prenatal, 64 n.3

Ex utero genetic testing, 47

F

Faden, Ruth, et al., 73 nn.78,80

Fair equality of opportunity, 118

Farrer, L. A., 68 n.49

Feinberg, Joel, 65 n.14

Fetal research laws, 47

Feyerabend, Paul, 13 n.7

Fiscal costs of genetic testing, 50

Fischer's Institute, 18

Fiscal incentives to genetic testing, 58

Fisher, Delbert A., 72 nn.75,76

Fitter Families, 17

Fleck, Leonard M., x , 151 nn.3,5

Fletcher, John C., 70 n.59

Foley, Barbara L., 72 n.75

Ford, Gerald, 36 –37

Forensic use of DNA, 79 –82

Fost, N. C., 132 n.16

Frye rule, 80 ff., 90 n.16

Future generations, 3 , 163

G

Galton, Francis, 14 , 27 n.2

Gauthier, David, 131 n.6

Gaylin, Willard, 67 n.33

Gene banking, 36 , 79 ff., 164

Genetic load, 166

Genetic testing:

access to, 50 –51;

banking of samples, 79 ff., 164 ;

costs of, 50 –51;

and counseling, 164 ;

discriminatory use of, 56 ff.;

of embryos, 47 –49, 64 nn.4,5, 137 , 140 ;

and employment, 164 ;

forensic use of, 79 –82;

for gender, 32 , 45 n.11;

and group identity, 33 –34, 36 , 40 ;

immigration standards, viii , 37 ;

and individual identity, 34 , 36 , 40 ;

informed consent in, 41 , 47 , 49 , 60 , 69 nn.51, 52 ;

justifications for, 56 ff.;

mandatory, 51 ff.;

mass screening, 53 –54;

medical information storage, 83 ff.;

of newborns, 3 , 59 , 72 nn.72, 75 , 73 n.78;

non-therapeutic testing, 47 ;

predicting disease, 82 , 128 –129;

prenatal testing ex vitro, 47 ;

prenatal testing in utero, 3 , 47 , 58 ;

privacy, 23 , 48 ff., 52 ;

restrictions on, 46 ff.;

right to refuse, 41 , 54 , 55 ;

risks of, 53 , 55 ;

standards for testing, 53 ;

state interests in, 46 –64 passim;

techniques of, 53 –54;

and tort liability, 61 , 64 n.1;

unwanted information, 56 .

See also Disease; Medicine

Genocide, 30

Genome maps:

archetypal, 33 , 35 ;

demic, 33 , 35 ;

significance of, 153 –154.

See also Human genome project

Germany, 17 , 22 –23, 28 nn.17,19, 30 –31. See also Nazi Germany

Germ line, genetic engineering of, 23 , 137 , 139 –142, 150

Glantz, Leonard H., 90 n.17

Golbus, M. S., et al., 64 n.2, 67 n.30

Goodman, M., and L. Goodman, 68 n.47

Gould, Stephen Jay, 27 n.9

Governor's Fitter Family Trophy, 17

Greeks, 17

Green Party, 22 , 24

Griswold v. Connecticut,67 n.36

Grobstein, Cliff, 65 n.6

Grodin v. Grodin,73 n.83

Growth hormone deficiency, 111 , 123

Guyer, Mark, 155

H

Haft, Jacob I., 70 n.60

Hammond, J. D., 131 n.3

Harburg, E., 45 n.14

Härlin, Benedikt, 22 –23, 28 n.16

Hartl, Daniel L., 167 nn.6,9

Healey, Bernadine, 76

Health care:

costs, 6 , 21 , 138 –139;

entitlement to, 136 ff., 166 ;

group advantages and disadvantages, 33 –34, 119 –120, 156 ff.;

influence of genome profiling on, 19 , 110 ;

justice and fair equality of opportunity, 115 ff., 118 ff., 134 ff.;

and the poor, 138 –139, 158 –159;

resource allocation, 136 ff., 146 ff., 162 –163, 166 ;

responsibility for health, 111 , 121 –122, 127 ff., 130 .

See also Justice

Heart disease, 137 ff., 156 –157. See also Artificial hearts

Hebrews, 17

Herzenberg, L. A., et al., 68 n.44

High blood pressure, 39 , 119

HIV screening, 54

Hodgson, John, 29 n.24

Holden, Constance, 167 n.13

Homosexuality, 32

Honda, K., et al., 168 n.19

Horne v. Patton,89 n.10

Human genome project:

characterizing populations, 155 –158, 163 ;

defined, vii , 7 ;

funding for, 136 ;

implications for diversity, 8 , 110 ;

implications for science, 2 –6, 153 –154;

improvement of health, 6 , 154 ff.;

predicting disease, 103 ff., 110 ;

predicting health risks, 41 , 154 ff.;

priority for, 133

Huntington's chorea, 16 , 25 , 50 , 55 , 56 , 62 , 70 n.56, 101 , 104

Hutchinson, T. M., 109 n.1

Hypothyroidism, 59

I

Idiocy, 18 , 19

Immigration, 17 , 31 , 37

Informed consent, 49 , 84 –86, 87

Inheritance, patterns of, 16 , 154 –155

Insurance:

access to genomic information, ix , 56 , 62 , 87 , 100 , 102 , 110 , 157 ;

actuarial fairness, 112 ff., 118 –119;

adverse selection, 62 , 93 –94, 108 , 113 ;

"assessment spirals," 94 ;

benefit theory, 110 –111;

conditioning benefits, 26 , 55 , 56 , 61 –62;

confidentiality of records, 105 ;

discrimination in, 56 , 93 , 103 , 105 ff.;

equality in, 93 , 116 –117;

equity in, x , xi , 92 , 93 , 105 –106, 116 –117, 130 –131;

group, 99 –100, 101 ;

health care responsibilities, 127 ff.;

individual, 99 –100, 101 ;

individual differences and social entitlement, 114 ff., 136 ff.;

individual disadvantages and social entitlement, 115 ff.;

market considerations, 116 –117;

moral fairness in, 114 ;

national health insurance, 21 , 119 , 158 ;

private (voluntary), 96 ff., 142 ;

public (involuntary), 97 ff.;

purpose and kinds, 96 ff., 113 , 118 ;

"redlining," 117 ;

risk classifications, 92 –96, 104 , 164 ;

significance of genomic variability, 100 ff.;

subsidies regarding, 26 , 135 ff.;

underwriting practices, 92 –93, 106 , 112

In vitro fertilization, 47 –48, 50 –51, 67 n.29, 150 –151

IQ tests, 16 , 161

Israeli law of return, 34

Italians, 17

Iuculano, R. P., 131 n.4

J

Jacobson v. Massachusetts,68 n.45, 71 n.65

James I and VI, 1

James, S. A., 45 n.14

Jewish identity, 34

Johnson, Earvin "Magic," 75

Justice:

between nations and populations, 163 ;

contractarian views of, 145 (see also Rawls);

distribution of benefits, 114 ff., 130 –131, 160 ff.;

entitlement to benefits, 115 ff.;

and fair equality of opportunity, 115 ff.;

and human control of outcome, 162 –163;

intergenerational considerations, 147 –149;

liberal conceptions of, 115 , 136 ;

limitations of ideal conceptions of justice, 134 ;

and the "natural lottery," 116 , 144 , 145 , 161 –163;

non-ideal forms, 134 ff.;

and obligations to develop genetic technologies, x , 133 ff.;

other values in relation to, 136 ff.;

preserving normal range of opportunity, 122 –126, 142 –143, 148 ;

and the remedy of genetic disease, 137 ff.; 164 ;

as requiring development of genetic technologies, 133 ;

"spheres of justice," 134 .

See also Insurance

K

Kahn, P., 44 n.1

Kansas Free Fair, 16

Kass, Leon, 13 n.9

Kater, M. H., 44 n.2, 45 n.6

Kennedy, John F., 36

Kevles, Daniel J., viii , 13 n.11, 27 nn.3,4,6, 28 nn.14,15, 67 n.34

Kumar, D., 45 n.11

Kusserow, R. P., 45 n.15

L

Lappé, Marc A., x , 45 n.10, 167 nn.8,11, 168 n.18

Larson, Edward J., 28 n.14

Legal standards. See Constitutional decisions regarding reproduction; Genetic testing; Privacy

Leonard, R. C., 168 n.14

Lerner, Richard M., 45 nn.4,6

Levy, Harvey, 73 n.79

Lewontin, Richard, 128 , 167 nn.6,9

Liberal conception of justice. See Justice

Libertarian conception of justice. See Justice

Lifchez v. Hartigan,48 , 57 , 70 n.63

Lifton, Robert J., 44 n.2, 45 n.6

Lincoln, Abraham, 36 , 88

Li Peng, 19

Lipsitz, Stuart, 151 n.8

Ludmerer, Kenneth M., 27 n.4

Luria, Salvador, 19

M

Macklin, Ruth, 67 n.33

Marriage, 19 , 31 , 38

Medicaid, 97 , 138 , 142

Medical records:

access to, 83 ;

as analogy for gene banks, 76 –77;

confidentiality, 77 ;

disclosure of, 75 , 78 –79;

how governed, 77 , 78 ;

as privileged, 78

Medicare, 97

Medicine:

defining "bad" genes, 141 ;

privacy of records, 75 ff.;

purposes of, 121 –122;

treatment/enhancement distinction in therapy, 29 n.24, 111 , 120 ff., 130 .

See also Disease; Genetic testing; Health care; Medical records

Mendel, Gregor, 16

Mengele, Josef, 18 , 45 n.4

Middlebrook, Diane Wood, 75 , 89

Mitchell, Marvin, 72 n.75

Mount, Frank, 73 n.79

Mourant, A. E., 167 n.7

Mueller, U. M., et al., 68 n.43

Müller-Hill, Benno, 27 n.3, 44 n.2

Munson, Ronald, 151 n.1

Murphy, Timothy F., vii

N

Narber, G. R., 109 n.1

National health insurance, 21 , 26 , 39

Native Americans, 35 –36

Navratilova, Martina, 18

Nazi Germany:

eugenics practices, 8 –9, 18 , 26 n.1, 30 –31, 44 n.2, 52 ;

as historical comparison, 14 , 19 –21

New Atlantis, 1 –2

Newborns:

testing of, 59 ff.;

treatment of, 59

New York Times v. United States,70 n.64, 71 n.67

Nietzsche, Friedrich, 8 , 13 n.10

Nozick, Robert, 115 , 116 , 131 n.5

O

Orne, Martin, 75

P

Pandolfi, Filip Maria, 24

Pargament, Eugene, 151 n.9

Pascal, Blaise, 11 , 12 , 13 nn.13,14

Pearson, Karl, 27 n.2

Pensées,12 , 13 n.14

Persons legally defined, 47 –49, 65 n.13

Phenylketonuria (PKU), 58 –60

Pierce, Franklin, 36

PKU, 58 –60

Planned Parenthood v. Casey , 50 , 66 n.22, 69 n.52

Plato, 14

Pokorski, Robert, ix

Poles, 17

Poverty, 158 –159, 163

"Prayer to Ask God," 11 , 13 n.13

"Predictive Medicine," 20 , 28 n.1

Prenatal testing, 45 n.11, 47 , 67 n.42. See also Genetic testing

President's Commission for the Study of Ethical Problems, 72 n.77

"Preventive Medicine," 20 ff.

Privacy:

in genetic testing, 48 –50;

of historical figures, 36 –37, 75 ;

informational, 78 ff.;

in medicine, 49 , 75 ;

in places, 78 ;

and privilege, 78 ;

in professional relationships, 77 ff.;

regarding genomic traits, 26 ;

in relationships, 78 ;

in reproduction, 49 , 165 ;

right to, 38 , 49 , 71 n.68, 75 ff.;

social effects, 76 ;

statutes regarding, 77

Privacy Protection Study Committee, 83 –85, 90 n.18

Proctor, Robert N., 27 nn.3,8, 44 n.2, 45 nn.4,8

Pross, C., 45 n.4

R

Race:

determinants of, 39 –40;

genomic standards for, 35 , 37 , 40 ;

and health, 39 , 42 ff., 45 n.14;

"inferior" races, 16 –17;

and insurance, 107 ;

moral relevance of, 124 ;

prejudice, viii , 16 –17, 161 ;

racist ideology, 31 , 33 ;

"superior" race efforts, 18 –19.

See also African-Americans; Transplantation

Rationing health care, 26

Rawls, John:

obligations to the least advantaged, 146 , 160 –161;

theory of justice, 115 –117, 131 –132 nn.7,8,11,12,17, 134 , 148 , 151 n.5, 168 n.15;

veil of ignorance, 145 , 147 , 160 –161

Rehnquist, William, 69 n.52

Reilly, Philip R., 28 n.14, 45 n.8, 52 , 67 nn.32,34,35,37

Reproduction. See Genetic testing; Prenatal testing

Roe v. Wade , 38 , 50 , 65 n.13, 66 n.22, 67 n.26, 69 n.52. See also Abortion

Roman Catholicism, 22 , 23 , 28 n.15

S

Sanger, Margaret, 8 , 13 n.12

Schwartz, William, 151 n.7

Science:

ideological, 4 ;

orthodoxy, 4 , 5 ;

and relation to social problems, 11

Searle, G. R., 27 n.3

Seidelman, W. E., 45 nn.4,6

Semen donation, 53

Sen, Amartya K., 132 n.18

Sepe, Stephen, 73 n.79

Serbians, 17

Sex selection, 32 , 45 n.11

Sexton, Anne, 75 , 88 –89, 90 n.22

Shapiro, A. F., 131 n.3

Shaw, Margery W., 68 n.40

Sickle cell anemia, 32 , 52 –53, 62 , 63 , 66 n.19, 137

Singapore, 19

Singer, Peter, 28 n.17

Skene, Loane, 13 n.5

Slippery slope arguments, 48 –49, 65 n.14

Smith, David W. E., 168 n.14

Sperm donation, 53

Steinbrook, Robert, 72 n.69

Stemerding, Dirk, 29 n.21

Sterilization, 18 , 19 , 21 , 31 , 52

Stewart, Potter, 70 –71 n.64

Strom, Charles, 151 n.9

Swedes, 17

Symbolism and the law, 48 –49

Syphilis, 17

T

Tay-Sachs, 25 , 50 , 53 , 55 , 63 , 67 n.27, 144 , 156

Thalassemia, 32

Thalassophilia, 16

Thornburg v. American College of Obstetricians and Gynecologists , 69 n.52

Thorton, Elizabeth M., 73 n.96

Traits in relation to genes, 158 –160, 164

Transplantation, 42 –44. See also African-Americans; Race

Tsongas, Paul, 75

Turpin v. Sortini , 73 n.85

Tyroler, A. A., 45 n.14

U

United States, eugenic practices, 8 , 15 , 17 , 18 , 20 –21, 28 n.14, 33 . See also Sterilization

U. S. Department of Energy, vii

U. S. v. Jakobetz , 90 n.15

V

Vaquin, Monette, 14

Verklinsky, Yury, 151 n.9

Verschuer, Otmar Von, 18

Vichinsky, E. P., 45 n.16

La Vie en Kit , 14

W

Waldholz, Michael, 29 n.25

Walzer, Michael, 134 , 151 n.2

Wambaugh, Joseph, 80

Watson James, D., 3 , 13 n.6, 76 , 88

Waxman, Barbara Faye, 19

Webster v. Reproductive Health Services , 50 , 66 n.22

Weindling, Paul, 27 n.3, 45 n.4

Weinstock, Murray, 70 n.60

Weiss, Jonathan A., 72 n.68

Weiss, Sheila Faith, 27 n.3

Wertz, Dorothy, 70 n.59

Westin, Alan, 89 n.8

Wexler, Nancy, 56 , 69 n.50, 70 n.53

White, Byron, 70 n.64

Wills, C., 167 n.4

Winfrey, Oprah, 83

Wipperman, Wolfgang, 45 n.6

Wizner, Stephen B., 72 n.68

Wolff, Sheldon, 73 n.96

Woodhead, A. D., 168 n.14

Wright, Robert, 25

Wrongful birth or life suits, 49 –50, 61 , 66 nn.17,18

Y

Yew, Lee Kwan, 19