Pediatric Bioethics Edited by Geoffrey Miller Index More Information

Cambridge University Press 978-0-521-13594-8 - Pediatric Bioethics Edited by Geoffrey Miller Index More information

Index

abortion, 176 Baumrind, Diana, 57 abuse, 176 Belmont Report, 57, 67 adderall, 231 beneficence,57 , 191 Aguirre twins, 207 benevolence, 9 altruism, 9 best interests, 23–35, 39, 60, 127, American Academy of Pediatrics (AAP), 174, 180, 204, 206, 211, 215, 226, 30, 67, 70, 73, 87, 113, 121, 141, 151, 268–270, 272–274 156, 160, 221, 268, 269 Bijani twins, 205, 207–210 American College of Medical Genetics, birth control, 175, 184 125 brain death, 248 American College of Surgeons, 189, 198 British Medical Association, 74 American Pediatric Surgical Association, Brown v. Board of Education, 45 189 American Society of Human Genetics, Canadian Paediatric Society, 73, 142, 125 256, 270 androgen insensitivity syndrome, 149, cardiopulmonary death, 248, 255 151, 158 Cardoza, Benjamin, 48–49 anencephalic babies, 255–257 Centers for Disease Control and apnea test, 249 Prevention (CDC), 115, 222 artificial hydration,252 , 255 Child Abuse Protection and Treatment Ashley treatment, 182 Act (CAPTA), 28–36, 278–280 Ashley X, 182 child labor law, 43 assent, 11, 59–60, 190 Child Neurology Society, 253 attention deficit hyperactivity disorder children as a means, 40–41 (ADHD), 231–240 clinical determination of brain death, Attard twins, 206, 210–215 250 atypical genital development, 149, 156 clitoromegaly, 157 autonomy, 173, 184, 190, 276 cloacal exstrophy, 155 coercion, 67, 177, 265 Baby Doe case, 165 cognitive enhancement, 240 Baby Doe rules, 28–36, 279 competence, 59 Baby Gabriel, 255 confirmatory tests of whole brain death, Baby K, 47 249 Bacon, Francis, 15 compassion, 9, 33, 90

285

286 Index

constrained parental autonomy, 127 feminist ethics, 166, 168 contraception, 176 fertility, 149 Council for International Organizations fetus in fetu, 203 of Medical Sciences, 58 fidelity,8 –9 Council on Ethical and Judicial Affairs of fiduciary obligation, 11–12 the American Medical Association, of parents, 11, 17–18 125 of physicians and parents as Counseling, 265 fiduciaries,18 –20 courage, 8, 90 Food and Drug Administration (FDA), craniopagus, 203, 206, 207, 209 187, 221, 233 creative phosphokinase, 114–115 futility, 264, 271 Cruzan, 275 futility legislation, 265

Danish Council of Ethics, 250 gender, 149, 150 Davis, Dena, 40 gender identity, 150 dead-donor requirement, 248, 255–256 gender role, 150 delivery room resuscitation, 143 Genetic Information Non-discrimination dexamethasone (DEX), 159–160 Act, 135 Diagnostic and Statistical Manual of Mental gestational age estimation, 141–142 Disorders, 4th ed (DSM-IX), 231–232 goals, 6–7, 26, 118 dicephalic twins, 203, 206–207 gonadal dysgenesis, 149 doctrine of double effect, 212 gonadal status, 153 do not resuscitate (DNR), 269 gonadectomy, 154 Dworkin, Gerald, 40 Gregory, John, 12, 15–17 Grimes v Kennedy Krieger, 62 electrocerebral silence on electroencephalography, 249 Heiman, Henry, 56 emancipated minor, 64 Hensel twins, 207 Emergency Medical Treatment and herd immunity, 226 Labor Act (EMTALA), 47–48 HIV 75, 76–77 Epicure study, 142 Hobbes, Thomas, 23 equipoise, 193 Holc, Paul, 255 Ethical Guidelines for Innovative Holmes, Oliver Wendell, 47 Surgery, 195 Holten twins ethics committees, 88–90 Hooker, Worthington, 73 case consultation, 96–102 Hopkins baby, 32 chairing, 102–103 hormone replacement therapy, 154, education, 104 158–159 follow-up and evaluation, 103–104 HPV vaccine, 223 membership, 90–96 Human Genome Project, 125 pediatric, 90–96 human subject research, 186, 195 policy development, 105 Hume, David, 15, 271 European Society for Paediatric humility, 9 Endocrinology, 151 Huntington disease, 27, 126, 134 eugenics, 177 hyperkinetic disorder, 232 extremely preterm infant, 141, 143 hysterectomy, 103, 182

familial adenomatous polyposis (FAP), Illinois appellate court, 183 131 immunization, 219–227 Feinberg, J., 132 immunoreactive trypsinogen (IRT), 117

Index 287

incest, 176 minimally conscious state, 257 infanticide, 170 –171 moderation, 8 informed consent, 178, 179 Money, John, 150 innovations, 188–189, 194, 196 Montalvo v. Borkovec, 30 In re Estate of C.W., 180 moral status, of children and parents, 38 In re E.G., 276 multidisciplinary team, 152–153 In re Estate of K.E.J., 183 Multi-Society Task Force on the In re Gault, 45 Persistent Vegetative State, 252 In re Terwillinger, 178, 179, 181, 183 Institute of Medicine, 113, 121, 222 National Association of Retarded institutional review boards (IRBs), Children (NARC), 113 57–69, 89, 187, 188, 191 National Commission for the Protection International Classification of Diseases, 10th of Subjects of Biochemical and ed (ICD 10), 232 Behavioral Research, 56 intersex, 149 National Society of Genetic Counselors, intolerability, 273 125 irreversible coma, 248 necessity, 191 ischiopagus, 203, 210 neglect, 176 neuro-enablement, 240 Jacobson v. Massachusetts, 225 newborn screening Jenner, Edward, 54–55 consent, 119–121 justice, 8, 32–33, 57, 69, 118, 119, 141, cystic fibrosis, 116–119 144–145, 192, 204, 206 Duchenne muscular dystrophy, 113 juvenile court system, 43 Guthrie cord, 112, 113–114, 119 identification of carriers, 116–117 Kennedy Kriegr Institue (KKI), 62–63 phenylketonuria, 111, 113–114 Klinefelter syndrome, 149 research, 119 sickle cell disease, 116–117 Lakeberg twins, 206 nonmaleficence,191 Lawson Wilkins Pediatric Endocrine nontraumatic brain injury, 252, 253 Society, 151 Nuffield Council on Bioethics, 142 legal status of children and parents, Nuremberg Code, 56 43–52 nurture-neuroethics, 208, 210, 214, 235 life-sustaining treatment, 250, 262–281 Linares, Sammy, 280 omphalopagus, 203 live donor liver graft transplantation, 193 orchiectomy, 158 Locke, John, 39–40, 43, 166–168 organ donation, 248, 251 Loma Linda University Medical Center, organ transplantation, 248 256 parasitic twin, 203 Marion’s Case, 281 parens patrial, 44, 49, 178, 179, 271, 275 marriage, 176 Parham v. JR, 39, 50 McCarther twins, 207 Paul, Diane, 114 McCormick, Richard, 56–57 paternalism, 173, 191 Mengele, Josef, 55 Pennsylvania, 178 mens rea, 214 Percival, Thomas, 12, 16–17 mental disability, 174, 176, 177, 178, 181, permanent vegetative state, 252–255 183 in children, 253, 264, 270 methylphenidate, 231 personhood, 165–166, 169 Meyer v. Nebraska, 44 Piaget, Jean, 63–64

288 Index

Pierce v. Society of Sisters, 44 Scientology movement, 233 Policy for the Protection of Human self-defense, 213 Research Subjects, 57–58 sexual function, 149 Poling, Hannah, 222 sexuality, 173, 174 poor, 177 sexual orientation, 150 worthy and unworthy, 14–15 Singapore, 208 Porter, Dorothy, 123 Singer, Peter, 165–170 Porter, Roy, 123 singleton assumption, 205 President’s Commission for the Study Society of University Surgeons, 190 of Ethical Problems in Medicine Sophie’s choice, 213 and Biomedical and Behavioral state laws, 182, 184, 225 Research, 87 status epilepticus, 189 Prince v. Massachusetts, 44–45, 49 sterilization, 177–179, 181, 183 professional integrity, 16, 18–19 sudden unexpected death in epilepsy proportionality, 208, 210 (SUDEP), 75–76 pseudohermaphroditism, 149 surgical innovation, 186, 191 pyopagus, 203 sympathy, 15

quality of life, 267 tandem mass spectrometry, 111 terminal illness, 264 Ramsey, Paul, 56–57 thimerosal, 221 rape, 176 thoracopagus, 203 Re A, 211, 215 transhumanism, 240 reasonableness, 25 traumatic brain injury, 252, 253 Re C, 274 trust, 15–16, 254, 263 Red Book, 221 truth telling, 73 reproductive privacy, 174, 175 cultural context, 78–80 research and dying child, 80–82 adolescents, 63–65 tubal ligation, 178, 180, 183 historical perspectives, 54–58 Turner syndrome, 75, 77–78, 149 informing parents and children, Tuskegee Syphilis Study, 56 61–62 minimal risk, 58 Universal Declaration on Bioethics and neonates, 66 Human Rights, 87 payments for participation, 66–70 United Nations Convention on the Rights regulations on, 56–59 of the Child, 50–51, 74 responsibility of investigators and United States Supreme Court, 44, 174, IRBs, 62–63 175, 225, 275 respect, 57, 204, 255 United States Uniform Determination of rights, 132–133 Death Act, 249 Ritalin, 231 utilitarian principle, 168 Roe v. Wade, 175 Royal College of Paediatrics and Child vaccines, 223 Health, 270 value judgment, 267 R v. Dudley, 214, 215 virtue ethics, 3–5 cardinal, 7–9 sacrifice surgery, 204, 206 and medicine, 5–6, 263 Schneider, Carl, 49 in pediatrics, 7

Index 289

wakefulness without awareness, Willowbrook State School, 55 252 wisdom, 7–8 ward, 65 World Health Organization, 112 Washington State law, 182 World Medical Association Declaration Washington State’s Protection and of Helsinki, 56 Advocacy System, 182 Wentworth, Arthur, 56 Zucert v. King, 225