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Cancer Patients, Adolescent Consent to Research
Most children with cancer enroll in clinical trials. These trials are most often sponsored by the National Cancer Institute's (NCI) Children's Oncology Group (COG). Entry into clinical trials is important to pediatric cancer patients because of the devastating and life-threatening nature of the disease and the lack of curative treatments. Many parents and oncologists enroll their children in clinical trials to receive the best state-of-the-art care, to possibly benefit from the experimental treatment, and to help generate knowledge that may produce effective treatments in the future. There are three types of clinical trials. Phase I trials evaluate safety, toxicity, and dosage level of a drug that has not been previously tested with children. Once a dosage level has been established, Phase II trials test its efficacy for specific types of cancer and evaluate its safety in a larger population. Phase III trials compare treatments that have proven efficacious in Phase II trials against the best standard treatment to date, to see whether it is more effective.
Pediatric Informed Consent in Law and Ethics
Adolescent participation in decisions regarding entry into cancer trials is a critical issue in pediatric ethics that has not been well studied. Voluntary informed consent is viewed by many as the best means of protecting the rights and welfare of individuals asked to participate in clinical research. The ethical value of informed consent rests on the assumption that individuals are able to understand (a) the nature and rationale of experimentation, (b) how the risks and potential benefits of participation may directly affect them or others, and (c) their research rights, including the right to dissent to or withdraw from participation. However, in both law and ethics, minors have been presumed to lack these capacities because of immature cognitive skills, inadequate experiences in situations analogous to the research context, and the actual and perceived power differentials between adolescents, parents, and clinical researchers. Based on this premise, guardian permission is required for participation of legal minors in research.
Empirical Evidence
Out of respect for children and adolescents as developing persons, the child's assent is obtained following parental permission. Research with healthy children and those involved in psychiatric treatment suggests that the ability to understand the nature of one's health condition, the nature of treatment, the purpose of research, and participants' rights in research matures to adult levels somewhere between 14 and 15 years of age (Abramovitch, Freedman, Thoden, & Nikolich, 1991; Bruzzese & Fisher, 2003; Morton & Green, 1991; Weithorn & Campbell, 1982).
Only recently has the consent capacity of children with acute and chronic diseases been studied. Broome, Richards, and Hall (2001), for example, found that understanding clinical trials by children diagnosed with either diabetes or a hematological malignancy was influenced not only by their age but also by their diagnosis (cancer patients' understanding was more compromised) and previous experience with research. In addition, despite their mature cognitive capacities, research suggests that older adolescents may not exert their rights in research because of fear of disapproval by parents, researchers, or health care workers (Abramovitch et al., 1991; Bruzzese & Fisher, 2003; Scherer, 1991; Susman, Dorn, & Fletcher, 1992).
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- Adolescent Development
- Abstinence in Adolescence
- Adolescence and Thriving
- Adolescence, Current Trends and Research About
- Adolescent Females, Physical Activity
- Adolescent Parents, Programs and Policies for
- Adolescent Pregnancy and Births
- Adolescent Sexuality
- Adolescents, at Risk
- Adolescents, Consent and Refusal of Treatment
- Alcohol Use and Disorders Among Youth
- Alcohol, Tobacco, and Drug Use, Media Education for Adolescents
- Asthma in Adolescence
- Athletic Participation and Girls' Development
- Cancer Patients, Adolescent Consent to Research
- Cigarette Smoking in Adolescents
- Dating in Adolescence
- Decision Making Among Adolescents
- Delinquency
- Depression in Adolescence
- Ethnic Identity Development in Minority Adolescents
- Gender Intensification
- HIV Prevention in Young Adults
- Lesbian, Gay, and Bisexual Youth
- Lesbian, Gay, and Bisexual Youth, Sexual Development
- Menarche
- Parenting in Adolescence
- Positive Youth Development, Service-Learning Versus Community Collaborative Models
- Puberty
- Religiosity and Resilience in Adolescence
- Resiliency in Adolescence
- Sexuality, Adolescents' Development of
- Silbereisen, Rainer K.
- Social Support, Urban Adolescents
- Stimulants, Adolescent Use of
- Youth Civic/Political Development
- Youth Development Professionals
- Youth Development Programs, Essential Elements of
- Youth Mentoring
- Youth-Adult Partnerships
- ADS Training and Education
- Education and Applied Developmental Science
- Planning and Evaluation Resource Center (PERC)
- Positive Development
- Training in Applied Developmental Science
- Yale University, Bush Center in Child Development and Social Policy
- Youth Development as a Public Idea
- Youth Development Professionals
- Youth Development Programs, Essential Elements of
- Adult Development
- Adult Development, Definition, Culture, and Applications
- Attention Deficit/Hyperactivity Disorder in Adults
- Chronic Disability in Old Age
- Depression in Later Life
- Depression, Maternal
- Family Caregiving for Elders
- Marriage and Family Therapy
- Mental Health in Later Life, Ecology of
- Mental Retardation, Sociocontextual Influences in Adulthood
- Old Age
- Psychoanalysis in Adults, Theory and Technique
- Sensory Impairment, Aging
- Social Support in Old Age
- Special Education, Transition From School to Young Adulthood
- Spiritual and Religious Coping in Later Life
- Transition in Adulthood
- Transition to College
- Vision Impairment, Late Life Adjustment and Rehabilitation
- Biographies of Applied Developmental Scientists
- Ames, Louise Bates
- Anastasi, Anne
- Benson, Peter L.
- Blum, Robert W.
- Bornstein, Marc H.
- Bronfenbrenner, Urie
- Brooks-Gunn, Jeanne
- Côté, James E.
- Cauce, Ana Mari
- Ceci, Stephen J.
- Chase-Lansdale, P. Lindsay
- Damon, William
- Eccles, Jacquelynne, and the Expectancy-Value Model of Achievement Choice
- Eisenberg, Nancy
- Elkind, David
- Farrington, David P.
- Fisher, Celia B.
- Flanagan, Constance A.
- Floyd, Donald T., Jr.
- Freud, Anna
- Freud, Sigmund
- Gardner, Howard
- Gesell, Arnold Lucius
- Hagen, John William
- Hall, G. Stanley
- Helms, Janet E.
- Horowitz, Frances Degen
- Jacobs, Francine
- Khoo, Kim Choo
- Lamb, Michael
- Lerner, Jacqueline V.
- Lerner, Richard M.
- Lipsitt, Lewis P.
- Little, Rick R.
- Meisels, Samuel J.
- Montessori, Maria
- Moore, Kristin
- Mussen, Paul H.
- Osofsky, Joy Doniger
- Overton, Willis F.
- Petersen, Anne C.
- Phinney, Jean S.
- Piaget, Jean
- Pittman, Karen J.
- Rhodes, Jean
- Savin-Williams, Ritch C.
- Seligman, Martin E. P.
- Sherrod, Lonnie R.
- Silbereisen, Rainer K.
- Smyer, Michael A.
- Spanier, Graham B.
- Terman, Lewis M.
- Watson, John B.
- Weinberg, Richard A.
- Wertlieb, Donald
- Wheeler, Wendy
- Windle, Michael
- Youniss, James
- Child Development
- Advertising, Effects on Children
- Alcoholism Prevention Programs for Children
- Anxiety Disorders in Children
- Bipolar Disorder in Children
- Cancer, Psychosocial Dimensions of
- Child Abuse, Religion-Related
- Child Care Centers, an International Perspective
- Child Care, Infant and Toddler
- Child Development Across Cultures
- Child Labor
- Children's Reading Comprehension
- Conflict and Conflict Resolution in Early Childhood
- Day Care, Effects on Child Development
- Day Care, Measuring Quality of Care
- Domestic Violence, Child Exposure to
- Early Childhood Care, Development, and Education in Asia
- Early Childhood Education in Turkey
- Feeding Disorders, Childhood
- Giftedness in African American Children
- Incarcerated Mothers, Children of
- Mastery Motivation, Preschool and Early Childhood
- Media and Children's Fears
- Obesity, Pediatric
- Obesity, Prevention in Childhood
- Pediatric Psychology
- Peer Play in Early Childhood
- Perceptual Development, Childhood
- Play, Nonsocial, and Social-Emotional Development in Childhood
- Prejudice in Childhood
- Psychotropic Medications
- Siblinghood, Transitions to
- Sports and Positive Youth Development
- Sports/Athletics, Children and
- Street Children
- Television, Children's Processing of
- Toddlerhood
- Visual Impairment Across the Life Span
- Women, Infants, and Children, Special Supplemental Food Program for
- Civic Engagement
- Advocacy, Child
- Civic Engagement
- Community Involvement
- Just-World Beliefs, Development of
- Mentoring
- Political Engagement
- Positive Youth Development, Service-Learning Versus Community-Collaborative Models
- Public Policy and Human Development
- Service Learning
- Youth Civic/Political Development
- Youth-Adult Partnerships
- Culture and Diversity
- Asian Americans, a Term in Transition
- Acculturation
- Acculturation Stress
- Achievement in Mathematics, Gender and Ethnic Differences
- African American Youth Development, Cultural Influences
- African Culture, Human Ontogenesis Within
- African Family Traditions, Education and
- Asian American Families and Youth
- Assessment, Cultural Validity of
- Bilingualism, International
- Child Care Centers, an International Perspective
- Child Development Across Cultures
- Community-Based Research Ethics
- Culture and Health
- Culture and Human Development
- Developmental Contextualism and Cultural Adjustment of Immigrant Children
- Early Childhood Care, Development, and Education in Asia
- Early Childhood Education in Turkey
- Ethical Issues in Cross-Cultural Research
- Ethnic Gloss
- Ethnic Identity
- Ethnic Identity Development in Minority Adolescents
- Ethnicity and Race, Understanding of
- Ethnography
- Immigrant Families, European
- Immigrants, Acculturation of
- Juvenile Justice, Racial Differences
- Native Alaskan Tribes
- Parenting, Chinese Families and
- Refugees
- Religion and Applied Developmental Science
- Street Children
- Youth Culture, Hip-hop
- Development-Promoting Interventions
- Adolescent Parents, Programs and Policies for
- Alcoholism Prevention Programs for Children
- Infants, Intervention for Premature
- Intervention Programs, Web-Based
- Mediated Learning Experience
- Social Skills Training and Pervasive Developmental Disorders (PDD)
- Supervision
- Thinking, Education for
- Transfer of Knowledge, Child Education About the Real World
- Women, Infants, and Children, Special Supplemental Food Program for
- Youth Mentoring
- Developmental Assessment
- Developmental Disorders
- Anorexia Nervosa
- Anxiety Disorders in Children
- Autism, Educational Treatments for
- Autistic Spectrum Disorders
- Bipolar Disorder
- Bipolar Disorder in Children
- Bulimia Nervosa
- Celiac Disease
- Clinical Significance
- Conduct Disorders
- Depression in Adolescence
- Developmental Disabilities
- Externalizing Behavior Problems
- Feeding Disorders, Childhood
- Gastrointestinal Disorders, Developmental Aspects of
- Mental Illness, Serotonin, and Genetics
- Mental Retardation
- Phobias, Childhood
- Postpartum Depression
- Developmental Processes
- Adaptation
- Adaptive Behavior
- Adolescence and Thriving
- Body Size and Image, Female Attitudes and Perceptions About
- Body Size, Societal Views of
- Career Development
- Children's Reading Comprehension
- Cognitive Development
- Cognitive Skills and Aging
- Cortisol and Stress
- Critical-Period Hypothesis
- Decision Making Among Adolescents
- Developmental Assets
- Egocentrism, Elkind's Contribution to Piagetian Theory
- Ethnicity and Race, Understanding of
- Gender Intensification
- Genetics and Human Development
- Giftedness in African American Children
- Human Brain, Evolution of
- Identity
- Identity Development in Biracial Children
- Identity Statuses
- Identity, Capital Model of
- Infant Reflexes
- Language Production in Infants and Toddlers
- Learning in the Life Cycle
- Lesbian, Gay, and Bisexual Youth, Sexual Development
- Limbic System, Hedonic Escalation
- Mastery Motivation, Preschool and Early Childhood
- Mediated Learning Experience
- Meiosis and Its Consequences
- Memory, Flashbulb
- Menarche
- Metacognition
- Morality, Theories of Development
- Play, Childhood
- Positive Development
- Problem Solving
- Prosocial Behavior
- Puberty
- Resiliency in Adolescence
- Self-Concept
- Self-Concepts and Self-Esteem, Children and Adolescents
- Self-Regulation
- Separation-Individuation, Margaret Mahler's Model
- Social Motivation
- Special Education, Transition From School to Young Adulthood
- Testimony, Children's Competence for
- Transition to College
- Developmental Risks
- Alcohol Use and Disorders Among Youth
- Child Abuse, Religion-Related
- Child labor
- Cigarette Smoking in Adolescents
- Cocaine
- Delinquency
- Diabetes
- Divorce, Its Impact on Children
- Domestic Violence, Child Exposure to
- Domestic Violence, Impact on Women and Children
- Homelessness and Runaway Youth
- Incarcerated Mothers, Children of
- Learned Helplessness and Learned Optimism
- Malnutrition, Effects of
- Obesity
- Risk Behaviors
- Sensory Impairment, Vision and Hearing
- Siblinghood, Transitions to
- Stimulants, Adolescent Use of
- Substance Use and Abuse Across the Life Span
- Sudden Infant Death Syndrome (SIDS)
- Traumatic Brain Injury, School Adjustment
- Violence, Effects on Development
- Youth Prostitution
- Ecology of Human Development
- Advertising, Effects on Children
- Body Types, Appraisals of
- Bullying, School
- Career Choice
- Community
- Community Linkages, Levels of
- Community Schools and Applied Developmental Research
- Community Youth Development
- Developmental Contextualism
- Developmental Contextualism and Cultural Adjustment of Immigrant Children
- Developmentally Attentive Communities
- Education, Urban
- Families, Dual-Career
- Interactive Media, Effects of
- Internet
- Maternal Employment
- Media and Children's Fears
- Media Use, Reading, and Academic Achievement
- Media Violence
- Mental Retardation, Sociocontextual Influences in Adulthood
- Occupations and Gender
- Peer Play in Early Childhood
- Peer Relationships
- Refugees
- School Counseling
- School Refusal
- School Transitions, Impact, Intervention, and Policy
- Schools and School Reform
- Schools, Consultation to
- Social Capital
- Social Change and Human Development
- Social Exclusion
- Social Support
- Social Support in Old Age
- Social Support, Urban Adolescents
- Sports, High School
- Television, Educational and Prosocial Effects of
- Video Games
- Youth Culture, Hip-hop
- Youth-Adult Partnerships
- Emotional and Social Development
- Ethics
- Families
- Adoption
- African Family Traditions, Education and
- Divorce, Its Impact on Children
- Families, Dual-Career
- Families, Immigrant Families in the United States
- Families, Multigenerational
- Family Caregiving for Elders
- Family Policy
- Family Systems Theory
- Immigrant Families, European
- Immigrants, Experiences of
- Latino Families in America
- Native American Children and Families
- Television, Mediating Effects of Family Communication
- Foundations
- Health
- Abstinence in Adolescence
- Adolescent Pregnancy and Births
- Asthma in Adolescence
- Cancer Patients, Adolescent Consent to Research
- Cancer, Psychosocial Dimensions of
- Celiac Disease
- Cortisol and Stress
- Culture and Health
- Diabetes
- Frontal Cortex
- HIV Prevention in Young Adults
- HIV Prevention With Injecting Drug Users
- Obesity, Pediatric
- Obesity, Prevention in Childhood
- Psychotropic Medications
- Religiosity and Mental Health
- Sensory Impairment, Aging
- Vision Impairment, Late Life Adjustment and Rehabilitation
- Visual Impairment Across the Life Span
- Youth Development as a Public Idea
- Youth Development Professionals
- Youth Development Programs, Essential Elements of
- Historical Influences
- Infant Development
- Organizations
- American Psychological Association, Division 7 (Developmental Psychology)
- Boys & Girls Clubs of America
- Bronfenbrenner Life Course Center
- Center for Child and Family Policy, Duke University
- Center for Social Development, Applied Developmental Science at
- Center for the Study of Human Development (CSHD), Brown University
- Center for Youth as Resources (CYAR), Headquarters for the Youth as Resources® (YAR)
- Child and Family Research, National Institute of Child Heath and Human Development
- Child Trends
- Community-Campus Partnerships and Community-Based Program Evaluation
- Erikson Institute
- Faith-Based Organizations
- Four-H (4-H)
- Head Start
- ImagineNations Group
- Innovation Center for Community and Youth Development
- Institute for Applied Research in Youth Development
- Institute for Policy Research, Northwestern University
- International Society for the Study of Behavioral Development
- Murray, Henry A., Research Center
- National Council on Family Relations
- Public Policy and Youth Development
- Search Institute
- Society for Research on Adolescence
- Society for the Psychological Study of Ethnic Minority Issues
- Society for the Study of Human Development
- Society of Clinical Child and Adolescent Psychology, Division 53, American Psychological Association
- UNICEF
- United Nations Convention on the Rights of the Child
- World Health Organization
- YouthBuild USA
- Parenting
- Adolescent Mothers
- Adolescent-Parent Relations
- Attachment, Child-Parent
- Bonding, Parent-Child
- Discipline, Early Childhood
- Families, Multigenerational
- Father Involvement
- Foster Care
- Gay and Lesbian Parenting, Community Attitudes Toward
- Gay and Lesbian Parenting, Legal Aspects of
- Parent Advocacy
- Parent Education
- Parent Expectations
- Parent Involvement, Programs in
- Parental Involvement in Education
- Parental Self-Efficacy
- Parenting in Adolescence
- Parenting, Chinese Families and
- Parenting, Divorce and
- Parenting, Native Americans and
- Parenting, Prejudice and
- Parenting, Single Mothers
- Parenting, Stressful Environments and
- Television, Mediating Effects of Family Communication
- Personality Development
- Religiosity and Spirituality
- Research Methodology
- Adolescence, Current Trends and Research About
- Assessment, Cultural Validity of
- Asset Mapping
- Brain Mapping
- Change, Quantitative and Qualitative Aspects of
- Community-Based Research Ethics
- Day Care, Measuring Quality of Care
- Delinquent Development, the Cambridge Study
- Field Experimentation Research
- Forensic Interviewing
- Policy-Relevant Methods in Applied Developmental Science
- Program Evaluation
- Research Design, Developmental
- Research Methods, Quantitative
- Research Methods, Statistical Analysis for Longitudinal Research
- Schools
- Social Issues
- Adolescent Mothers
- AIDS, Women, and Poverty
- Computer Games
- Family Policy
- Juvenile Justice, Racial Differences
- Media and Developmental Science
- Parenting, Single Mothers
- Participant Advocate, Research Involving Children
- Prejudice in Childhood
- Racism
- Silbereisen, Rainer K.
- Socioeconomic Status
- Welfare Reform
- Work and Family Life
- Theory
- “Goodness of Fit” and Development
- Applied Developmental Science, Concepts of
- Behavior Theory
- Developmental Contextualism and Cultural Adjustment of Immigrant Children
- Developmental Systems Theories
- Eccles, Jacquelynne, and the Expectancy-Value Model of Achievement Choice
- Empowerment Theory and Youth
- Erickson's Theory
- Family Systems Theory
- Identity, Helm's Theory of Racial
- Life Events
- Life Expectancy and the Life Span
- Overton, Willis F., Philosophical Foundations of Developmental Science
- Pediatric Psychology
- Perceptual Development, Childhood
- Philosophy of Science and Applied Developmental Science
- Positive Psychology
- Positive Psychology, Seligman's Concept of
- Positive Youth Development, a Developmental Systems View
- Problem Behavior Theory
- Psychoanalysis in Adults, Theory and Technique
- Recapitulation
- Sport Psychology
- Stage Theories of Human Development
- Stage-Environment Fit Theory
- Television, Children's Processing of
- Universities
- Bronfenbrenner Life Course Center
- Catholic University of America
- Center for Child and Family Policy, Duke University
- Center for the Study of Human Development (CSHD), Brown University
- Fordham University
- Fuller Theological Seminary
- Institute for Applied Research in Youth Development
- Institute for Policy Research, Northwestern University
- Institute of Child Development
- Michigan State University, Applied Developmental Science at
- Northwestern University, Human Development and Social Policy Program
- Tufts University, Eliot-Pearson Department of Child Development
- University of Michigan
- University of Wisconsin–Madison
- Yale University, Bush Center in Child Development and Social Policy
- Youth Programs
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