oxford handbook of bioethics

Mann, Jonathan 675, 676 Manning, Rita 38, 39

marginal cases, argument from 656 – 9, 663 – 4 Markel, Howard 685

market segmentation 540 – 1 Marquis, Don 430 – 1, 576, 578 Marsden, Leonard and Leon 223, 231 Marx, Karl 261 – 2

Mastroianni, Anna 679, 681 May, William F. 87 Meaney, Michael 521 medical interest 223 – 4

medically assisted reproduction 74; see also assisted reproductive technologies

Medicare 684

mental illness 91 – 2, 97, 100, 102, 110 – 11, 601 – 2, 604, 605

community 601

Merrick, Ronald and Richard 213 Method of moral reasoning 60, 68

Mill, John Stuart 73, 75, 82 – 3, 84 – 5, 156, 336, 527, 650

Miller, Daniel 686

mind, philosophy of 116 – 17, 120 – 33 minimal risk 606, 608 – 9, 617 – 618 minority 170 – 1

Mischel, Walter 523

Modavigil 518, 533

Model State Emergency Health Powers Act 725 Momeyer, Richard 326, 329

Monoamine oxidase region 524 Mooney, C. 325 n. 3

Moore, M. S. 94 moral:

considerability 314 constructivism 81

foundations, objections from 572, 584 – 90 individualism 81

obligation 517, 523 ground of 575 – 6, 577

principles 50

as hypotheses 51 rules 23

standing 104 status:

and anencephalic infants 427

as compared to moral value 417, 433 – 5 and interests 417, 428 – 37

and persistent vegetative state (PVS) 427 and sentience 427 – 9, 431,

and species membership 420, 426

of very early embryos 417, 421 – 2, 427, 429, 431 n. 10, 432 – 3, 436

voluntarism 81 – 2

moratorium 170 – 1

morbidity, compression 327 – 28 Morell, Virginia 524

Moreno, Jonathan 673, 675 Morone, James 682

morphine and double-effect 141 – 3 motherhood, patriarchal ideals 272 – 3 motives 130 – 1

Msamanga, Gernard 680 multiple sclerosis 244 multiplier effect 727 Murphy, Timothy 684 Murray, Joseph 211, 213 Murray, Tom 684, 517 Mutnik (dog) 98, 110

Naam, Ramez 329 n. 12, 330 n. 15, 331 n. 17, 337 n. 32, 338 n. 36, 343, 344 n. 48

Nagel, Thomas 190, 199, 325 – 6, 331, 332 n. 23

narrative ethics 46 n. 3

and precedent autonomy 363 – 5

National Alliance for the Mentally Ill (NAMI), see U. S. National Alliance for the Mentally Ill

National Bioethics Advisory Commission (NBAC), see U. S. National Bioethics Advisory Commission

National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, see U. S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research

National Human Genome Research Institute (NHGRI), see U. S. National Human Genome Research Institute

National Institute on Aging, see U. S. National Institute on Aging

National Research Act, see U. S. National Research Act

National Research Council (NRC), see National Research Council

national security 729, 724, 730 natural law 305, 307 – 9, 311 – 12 natural lottery 530

Nazis 721, 723

necessity requirement 605, 610 negative liberty 73, 84 – 6, 87 Nelson, Hilde Lindemann 330, 342 Nelson, James Lindemann 330, 342 nerve gas 724

neurotransmitters 524 neurotrophins 519

Nevirapine 681

newborn screening 685 – 6 Niebuhr, Reinhold 315 noncompetent subject 600, 606 – 7,

618

non-exploitation approach 584 – 90 nonmaleficence, principle of 674 nontherapeutic components of research

607 – 9

non-therapeutic research 622 – 4 Nuffield Council on Bioethics 242, 252 Nuland, Sherwin 325, 337 – 8 Nuremberg Code 623 – 4, 723

Oakley, Justin 36

objective list ethical theories 522 objective stance 104 – 5, 111 obligation 521, 525

parental 521 see also moral

observational studies 724 – 5 O’Connell, Laurence 683 O’Fallon, Liam 672

Office of Genomics and Disease Prevention, CDC 686

Office of Human Research Protections 604

Okoye, Sylvia 681 Omenn, Gilbert 684

On Liberty 82 – 83

One Flew Over the Cuckoo’s Nest 601 O’Neill, Onora 21, 76, 78

oocyte retrieval 263 – 4 risks from 265

oocyte vending 259 – 60, 263 – 6 as ‘donation’ 268

and informed choice 265, 271 two-tiered market 270 n.

open consensus 170

opportunity 517, 521, 523, 525, 531 for the best life 532

of a better life 530 for a good life 526

oppression 267 Oregon 76

organ retention 241, 251 organ transplant 673, 682 Orphan Drug Act 541 – 2 Orwell, George 333

Overall, Christine 325, 326, 327 – 32, 335 – 8, 340 – 2, 344 – 5

overlapping consensus 61 overpopulation 334 – 7 ownership of information 477

Pace, Christine 679, 681 Palma, Veronica 519 pandemic 677, 688 paradigm cases 30 – 2 Parens, Erik 493

Parfit, Derek 343 n. 46, 195, 198 – 9, 356 – 7, 366 – 7, 651 – 2

parenthood, standards of 273, 277 parthenogenesis 419

participant stance 99, 106 – 8, 110 – 12 partner notification 679

paternalism 24, 37, 500

vestiges in clinical research 582 – 3 Paul, Diane 686

paying for organs 225 – 8 objections to 225 – 6

PEG feeding 319 – 20 Pellegrino, Edmund 37, 38

performance-enhancing drugs 518; see also sport; steroids

Pernick, Martin 686

person view 417, 426 – 8, 429, 432; see also Warren, Mary Anne

personal health information 688 personal identity 95

and losing mental capacity 356 – 8 Persson, Ingmar 524 n.

Perversion of Autonomy, The 76 see Gaylin, Willard and Jennings, Bruce

Peters, Richard S. 77 Petersson, Bo 59 pharmaceutical industry 628 – 9 pharmacogenomics 244, 684

Biobanks 552 – 4 community review 547 – 50

direct-to-consumer (DTC) 556 – 7 drug labeling 556

exceptionalism 538 – 40, 538 n. 3 informed consent, information technology

and 550 – 2

intellectual property rights 542 – 3 medical malpractice 558

off-label use 560

professional obligations 557 – 9 race 544 – 6

physician pay-for-performance 684 placebo 598

placebo control, controls 588 – 9, 593 in research 636 – 8, 679 – 80

plastic surgery 501, 511 Playing God 528, 528 – 530 pluripotency 418

police powers 672

policy community 443, 449 – 50, 461

policy-making 153 – 172 model of 449, 462

Pope John Paul II, see John Paul II, Pope population genomic research 473 populations v. social groups 475 positional goods 531

positive liberty 73, 85 – 6 Posner, Richard 198 Post-humanism 307 – 9, 321 post-trial obligations 638 – 44 potential:

benefit:

reasonable prospect of 606 to subjects 606

and future development 419, 424 – 5 and moral status 424 – 5, 427

and moral value 436

and non-viable embryos 424 – 5 terrorist substances 731, 732

power of attorney, see health care practical deliberation 94 pragmatism and bioethics 46 n. 4, 47 precedent autonomy 349 – 74

arguments against respecting it 350 – 1, 355 – 6, 360 – 1

arguments for respecting it 350 – 1, 354 – 5, 360, 362 – 3, 365 – 7

defined 358 – 9

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, see U. S. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research

President’s Council on Bioethics, see U. S. President’s Council on Bioethics

prevention in public health genetics: genotypic prevention 484 – 5 phenotypic prevention 482 – 4

pricing strategies 726, 731 Priebe, S. 97, 100, 103 prima facie 20, 25, 28

principle-based bioethics 674 principle of autonomy 674 principle of beneficence 674 principle of justice 674 principle of nonmaleficence 674

principle-based methods 17 – 29 principles 17, 23, 31

Principles of Biomedical Ethics, The 73 see

Beauchamp, Tom and Childress, James principlism 21, 22, 28, 29, 47

privacy 676, 678, 679, 684, 685, 687, 688 genetic 685

procreative freedom 526, 527 Proctor, Robert 686 prolongevity 306 – 8 promethean argument 501 – 2 property seizure 726 proportionality 116, 120, 143 proxy, see informed consent Prozac 518, 519, 521, 522, 533

prudence and justice between age-groups 191 – 4 psychiatric disorder, see psychiatric illnesses psychiatric ethics 93

psychiatric illnesses 94, 97, 602 psychoactive drugs 723, 724 psychosocial risks 684, 685 public engagement 686

public health:

genetics/genomics 673, 684, 686 preparedness of states 725

overall 727

state of emergency 726, 727 surveillance 725, 726

public trust 722, 727, 728, 729, 730 Puccetti, Roland 330 n. 15, 332

quarantine 726, 727, 729 Quills, Timothy 40 Quinlan, Karen Ann 673

Rachels, James 661 Radden, Jennifer 92, 107

Radin, Margaret 262, 266 – 8, 275

Ragone, Helena 264 – 5, 269 – 70 Ramsey, Paul 21, 28

Rawls, John 47, 61, 153, 158 – 9, 179, 181, 182, 190, 339 – 40, 342 n. 43, 343 n. 46, 662, 665

Raz, Joseph 62 Razum, Oliver 681 reactive attitudes 99

reason, public 159 – 60, 163 reasonable risk in clinical research:

defined 591

operational criteria for 592 – 4

see also equipoise; non-exploitation; integrative approach

reasoning 612; see also decision making reciprocity 100, 104, 106 – 7, 109 – 11

in public discourse 159 – 60

Recombinant DNA Advisory Committee 442, 460

reflective equilibrium 24, 31, 46, 71 narrow 52

wide 52, 55 – 6

as regulative ideal of moral justification 66 reflective self-control 93 – 4

Regan, Tom 665 registries:

birth defects 687 vaccination 687

regulatory agency 629 – 30 Reilly, Philip 685, 687

Relational Autonomy 76

reporting infectious disease 671, 673, 678 – 9 reproduction 334 – 7

reproductive:

cloning, see reproductive SCNT counselling 75

freedom 156 liberty 169, 171 reproductive SCNT:

abbreviation 441

U. S. Congress and 444, 446, 449 – 51 reprogenetics 442, 449

research:

advance directive 619

ethics committee 624 – 5, 630 – 2, 641, 643 obligation to undertake 255 – 6

risks and benefits 600 subject 625 – 7, 643

researcher 627 – 8 resentment 108 – 9

resistance is futile claim 500 – 1 resource allocation 726, 727, 728, 730 respect:

for autonomy in research 623 – 4 for community 474

for the dead 435

for embryos 417, 432 – 8 Kantian 417, 436 – 8 morality of 437

responsibility 92, 107 – 8

retirement, compulsory 336 – 7 n. 31 Rhoden, Nancy 360 – 1

Richardson, Henry 24, 25, 27

Riesman, David 79 see The Lonely Crowd

Rietze, R. 519

right, rights 655 – 61 civil rights 674 consumer rights 674 to die 674

to forgo life-extending treatment 76 patient rights 674

risk 522

benefit ratio 624 – 5, 641

to benefit assessment 606, 608 whole protocol approach 606

to knowledge assessment 606 Ritalin 518, 533

Robertson, John A. 356, 368

Roe v. Wade 74 Rogatz, P. 329 n. 10 role-related obligations:

see therapeutic obligation; fiduciary duties; duty of personal care

see also moral foundations, objections from Rosen, J. 326 n. 5

Ross, Lainie 224, 233, 684 Rothman, David and Sheila 500 Rothstein, Mark 684, 685 Rousseau, Jean-Jacques 82 Rowley, J. 328 n. 10

Rudman, Stanley 314 rules 17

Sabat, Steven 318 safety 526, 532

Sandel, Michael 436, 437, 506, 507, 508, 516 Sankar, Pamela 685

Satcher, David 680, 687

Satz, Debra 274, 276 – 8

Savulescu, Julian 524, 527, 529, 531 Sawyer, Robert 335 n. 27, 343, 344 n. 48 Scanlon, Thomas 77, 662 – 3 schizophrenia 90 – 1, 603, 611 Schmidtz, David 657

Schneider, Carl 76

Schull, William 684

Searle, John 117, 122, 124, 128, 129 Second World War experiments 622 – 4 Secretary’s Advisory Committee on Genetic

Testing (SACGT) 685 Secundy, Marian 683

selective serotonin reuptake inhibitors (SSRIs) 491, 495

self-authorship 95 self-concept 102 – 3 self-paternalism 359 n. 15

selling organs, see paying for organs sentience 427 – 32; see also interests sepsis 606, 609

Shalev, Carmel 681

sham surgical procedure 598 Shaw, George Bernard 307 Sherman, William T. 721 Sherwin, Susan 39

Shiffrin, Seana 203

short course regiment for HIV infection 679 – 80 sickle cell disease 686

side-effect 137 Sidgwick, Henry 15

Singer, Peter 18, 326 n. 6, 334 – 5, 345 single-payer health care 682, 683 Skocpol, Theda 682

Slevin, M. 327 Slote, Michael 34 smallpox 722, 727

social contract theory 661 – 6 soft paternalism 362 Solomon, David 17

somatic cell nuclear transfer (SCNT) 418, 425 – 6 specification 21, 24, 26, 27, 29

Sperling, Rhoda 680 Spires, Tara 519 Spital, Aaron 220 – 3

sponsor in research 628 – 9 sport 517, 518, 532

stakeholder theory’’D 731

standard of care, standard of treatment 679 – 81 in research 634 – 6, 643

Starzl, Thomas 216 – 17 state 154, 156 – 7

Steele, Hunter 331 n. 19

Steinbock, Bonnie 260, 264, 336 n. 30, 655 – 6, 658 – 9

stem cell, cells 154, 156 – 7, 164 – 6, 168 – 9, 171 – 2

adult stem cells 419 – 20

alternative sources of human pluripotent stem cells 417, 423 – 6

embryonic stem (ES) cells 417 – 20, 423 – 4, 438

derivation of 416, 418 – 19 embryonic stem (ES) cell research:

clinical trials 460

egg and embryo donation 445, 457 – 9 federal funding (US) 447, 451 method of derivation 445

moral status of human embryos 443 political issue 446

state funding (US) 452 – 3 neural stem cells 519 research 259

Sterba, James 162

Stewart, Susie 684

stigma 678, 684, 685, 686, 687 Stock, Gregory 163, 307

stoic heritage 315 Stoljar, Natalie 38, 76 Stone, David 684

Strawson, Peter 99, 104 – 9, 111 Strong, Carson 27, 29 substituted judgment 618 – 19

principle of 352 – 3 suicide 17, 21, 331 Sullivan, Florinda R. 519 Sulmasy, Daniel 16

Sumner, Leonard Wayne 33 Sunstein, Cass 160

Superintendent of Belchertown State School, et al. v. Saikewica 234

surrogate decision maker 352 surviving interests 355, 367 – 71

defined 368

Szasz, Thomas 92, 104

The Myth of Mental Illness 92

Taylor, Charles 79

Taylor, Telford 73 technology 163 – 6, 171 Temkin, Larry 193, 343 n. 46 temporary coma 431

and having FLO 432

Ten Commandments, the 81 Tennen, Melissa 345 n. 50

testing, genetic and selection 520, 526, 528 – 30 testosterone 492

Thailand, and HIV research 680 The, Guy de 679, 681

therapeutic cloning, see therapeutic SCNT therapeutic components of research 607 therapeutic obligation 576

rejected 584 – 5 therapeutic SCNT:

abbreviation 441

policies across nations 441, 445 – 6, 454, 457, 462

policy development 443

political issue in US 441 – 2, 444, 446 somatic cell donation 459

South Korea 445, 448, 457 technique 445

and U. S. Congress 443, 445 – 7, 450 – 1, 463 theory 15, 16

Thomson, Judith Jarvis 74

Titicut Follies 601 Tocqueville, Alexis de 79 totipotency 418, 422 Toulmin, Stephen 30, 54 Tranøy, Knut Erik 169 – 170 triage decisions 727 – 8, 729 tube feeding see PEG feeding

Ulysses contracts for psychiatric care 351 n. 4 uncertainty

as clinical agnosticism 579

as clinical conflict 579 – 81, 84 epistemic threshold of 575, 577 – 9

principle of 574, 577 whose matters 574

see also equipoise; uncertainty principle; integrative approach

understanding 612, 614; see also decision making

unified agency, see agency utilitarianism 650 – 5 utility 17, 18:

objections from 572, 577 – 584 of self 96

universal health care 684 United Nations (UN) 187

U. S. Centers for Disease Control and Prevention (CDC) 686

U. S. Department of Defense 723

U. S. Department of Health Education and Welfare 599

U. S. Department of Health and Human Services 604, 727

U. S. Food and Drug Administration (FDA) 601, 602, 722

U. S. National Alliance for the Mentally Ill (NAMI) 602, 612

U. S. National Bioethics Advisory Commission (NBAC) 41, 166, 242, 599, 604, 615

U. S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 22, 41, 600, 605, 615, 674

U. S. National Human Genome Research Institute (NHGRI) 684

U. S. National Institute on Aging 311 U. S. National Research Act 601

U. S. National Research Council (NRC) 687 U. S. Ninth Federal District Court 76

U. S. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 73

U. S. President’s Council of Bioethics 305, 306, 325, 326 n. 6, 328 n. 10, 329 n. 11, 332, 337 n. 33 – 4, 338 n. 36, 344 n. 48, 423 – 6, 436, 502, 516

U. S. Public Health Service, Tuskegee, AL Syphilis Study 87

Urnov, Fyodor D. 520 utilitarian 618

approaches of 672, 674, 676, 678, 680 – 2, 688

van Dellen, Anton, see Dellen, Anton van Varmus, Harold 680, 687

Veatch, Robert 21, 22, 26 veil of ignorance 339 – 42 Velleman, David 95 – 6

vertical transmission of HIV 679 – 81 Viagra 518, 523, 525, 533

Virchnow, Rudolf 241 virtue ethics 3 – 38 virtues 523

vulnerable populations 601

Walker, Margaret 330

Wallace, R. Jay 94, 105

Waller Commission 73 Walzer, Michael 169

Warnock Committee 421 – 2, 433 Warren, Mary Anne 426 – 8, 656, 658, 659 Watson, Gary 106

Watson, Michael 684

Watts, J. 97, 100, 103

Weijer, Charles 41, 585, 675 – 6 well-being 522, 525, 531 Wellcome, Henry 240 Wendell, Susan 328

Wendler, David 679, 681 Wertheimer, Alan 344 n. 47 White, Alan 657

White House Task Force on Health Care 683 Wildes, Kevin 21

Williams, Bernard 177 – 9, 331 n. 18 Wolf, Susan 684

Wolfe, Alan 79 Wolfe, Sidney 680 Wolff, Robert Paul 77

womanhood, patriarchal ideals 259, 267, 269, 272 – 3

women’s reproductive labour 259, 263 – 6 and altruism 268 – 9

and autonomy 260, 268 – 9, 272, 275 – 7 black market in 270 – 1, 278

and economic inequality 264 – 7, 270, 277 – 8

and exploitation 265 – 6 and the law 259

and paternalism 269 – 7 payment for 264, 271 – 2 and women’s identity 274 – 5

Woods, John 335 – 6 Woolhandler, Steffie 683

WWII experiments, see Second World War experiments

World Trade Center 724

Yamey, Gavin 681

Yearby, Ruqaiijah 679, 681

Young, J. 97

Zucker-Landry proposal 423 – 5