Tercyak Handbook of Genomics and the Family

Psychosocial Context for Children and Adolescents
1. Auflage 2010
ISBN: 978-1-4419-5800-6
Verlag: Springer
Format: PDF
Kopierschutz: 1 - PDF Watermark

E-Book, Englisch, 615 Seiten

Reihe: Issues in Clinical Child Psychology

This book introduces readers to the study of how genes, singly and in combination with each other and the environment, affect health and behavior. It provides family-focused perspectives relating to genetic counseling and education.

Kenneth P. Tercyak, PhD is an associate professor in the Division of Health Outcomes and Health Behaviors of the Department of Oncology and in Pediatrics at the Georgetown University Medical Center in Washington, DC. He received his bachelor of arts degree in psychology from the University of Pennsylvania, and doctor of philosophy in clinical psychology from the University of Florida's College of Public Health and Health Professions.Dr. Tercyak's research has focused on cancer prevention and control among children, adolescents, and families. This includes investigations of the social and behavioral aspects of genetic testing for hereditary cancer syndromes among parents, developing and testing strategies for informed decision making and communication support in cancer genetics, and evaluating long-term outcomes among children growing-up in environments affected by familial cancer. Dr. Tercyak's other investigations have included a focus on biopsychosocial influences on youth smoking adoption, pediatric cancer survivorship, adolescent health promotion, and predictive testing for common disease risk. He has received continuous funding by the National Institutes of Health since 1998, including a National Research Service Award and Research Career Development Award from the National Cancer Institute, and funding from the National Human Genome Research Institute's Ethical, Legal, and Social Implications research program and the Division of Cancer Control and Population Sciences at the National Cancer Institute.Dr. Tercyak's scholarly contributions consist of more than 75 journal articles and book chapters. He has delivered invited presentations at a number of scientific organizations, including the American Society of Human Genetics, the Dana-Farber Cancer Institute, and St. Jude Children's Research Hospital.Dr. Tercyak is a Full Member of the Division of Population Sciences and the Jess and Mildred Fisher Center for Familial Cancer Research at the Lombardi Comprehensive Cancer Center at Georgetown. He is also a member of the Behavioral Medicine Study Section of the National Institutes of Health, and former member of the psychosocial peer review committees of the American Cancer Society and Susan G. Komen for the Cure Foundation; he has served as a grant reviewer for other National Institutes of Health study sections and special emphasis panels and international research organizations as well. Dr. Tercyak is a reviewer for a number of professional journals. Currently, he is serving a term as Associate Editor for prevention science at the Journal of Pediatric Psychology and is a member of the incoming editorial board at Health Psychology.

Autoren/Hrsg.

Tercyak, Kenneth P.

Inhaltsverzeichnis

1;Preface;6
1.1;References;10
2;Acknowledgments;14
3;Contents;15
4;Introduction;18
5;About The Editor;20
6;Contributors;22
7;Part I Introduction to Genomics;25
7.1;1 Key Concepts in Human Genomics and Epidemiology;26
7.1.1; Introduction;26
7.1.2; The Human Genome Project;28
7.1.3; Neural Tube Defects;30
7.1.3.1; The Etiology of NTD Involves Environmental and Genetic Factors;31
7.1.3.2; Genetic Causes of NTD;32
7.1.3.3; Interrelationship of Folic Acid and Genetics in NTD;33
7.1.3.4; Environmental Causes of Neural Tube Defects;35
7.1.3.5; Environmental, Dietary, and Genetic Interactions in NTD;36
7.1.4; Childhood Cancer;37
7.1.4.1; The Etiology of Childhood Leukemia Involves Environmental and Genetic Factors;38
7.1.4.2; Genetic Causes of Childhood Leukemia;38
7.1.4.3; Environmental Factors and Childhood Leukemia;39
7.1.4.4; Environmental and Genetic Interactions in Childhood Leukemia;41
7.1.5; Conclusions: Impacts Of Expanding Research In Genomics And ChildrenS Health;43
7.1.6;References;10
7.2;2 Psychological Genetics: Understanding the Natureof Psychological Differences Through Etiology;55
7.2.1; Introduction;55
7.2.2; Principles Of Behavioral Genetic Design: The Coinheritance Of Genetic And Psychological Characteristics;56
7.2.3; Types Of Behavioral Genetic Designs;58
7.2.4; Generalizations To Be Made About Genes And Human Behavior;62
7.2.5; Delineating Psychological Constructs: The Interdependence Of Psychological And Genetic Inquiry;66
7.2.6; Emerging Issues And The Future Of Psychology And Genetics;73
7.2.7;References;74
8;Part II CrossCutting Issues in Children and Families;78
8.1;3 Understanding Gene, Environment, and Gene Environment Interaction Effects: The Exampleof Childhood Externalizing Disorders;79
8.1.1; Introduction;79
8.1.2; Family Studies;82
8.1.3; Twin Studies;83
8.1.4; Adoption Studies;86
8.1.5; Combination Studies;88
8.1.6; GeneEnvironment Correlation And Interaction;91
8.1.7; Conclusions And Future Directions;97
8.1.8;References;99
8.2;4 Process in Genetic Counseling: Considerations for Children and Their Families;107
8.2.1; Introduction;107
8.2.2; Role Of Genetic Counseling;108
8.2.2.1; Structure of Medical Genetics Counseling Sessions;109
8.2.2.2; Comprehension and Family Meaning of Genetic Health Information;110
8.2.2.3; Intrafamilial Relationships and Communication Dynamics;111
8.2.2.4; Empowering Families;113
8.2.3; Special Considerations For Children;114
8.2.3.1; Genetic and Genomic Testing;114
8.2.3.2; Ethical Concerns About Testing;115
8.2.3.3; Considerations for Communicating Genetic and Genomic Information to Children;117
8.2.4; Increasing The Complexity: Integrating Genomic Risk Information;120
8.2.4.1; Genomic Testing and Risk Information for Children and Families;120
8.2.4.2; New Challenges;121
8.2.4.3; Counseling About Genomic Health Information;122
8.2.5; Conclusion;123
8.2.6;References;123
8.3;5 Genomics and the Family: Integrative Frameworks;128
8.3.1; Introduction;128
8.3.2; Importance Of Theory And Theorizing;129
8.3.3; Case Study;130
8.3.4; Individual And Family Factors That Influence Adaptation;131
8.3.5; Factors That Influenced Adaptation In JenniferS Family;132
8.3.6; RiskResistance Adaptation Models;134
8.3.6.1; Risk Factors;135
8.3.6.2; Resistance Factors;135
8.3.6.3; Adjustment/Adaptation Outcomes;136
8.3.7; Resiliency Model Of Family Stress, Adjustment, And Adaptation;136
8.3.7.1; Family Demands;138
8.3.7.2; Family Types;138
8.3.7.3; Family Resources;139
8.3.7.4; Family Appraisal;140
8.3.7.5; Family Problem-Solving Communication and Coping;140
8.3.8; Family Management Style Framework;141
8.3.8.1; Definition of the Situation;144
8.3.8.2; Management Behaviors;145
8.3.8.3; Perceived Consequences;146
8.3.8.4; Family Management Style;146
8.3.9; Family System Genetic Illness Model;147
8.3.9.1; Psychosocial Typology of Genomic Disorders;148
8.3.9.2; Nonsymptomatic Time Phases of Genomic Disorders;149
8.3.10; Relationship Between Guiding Framework And Plan Of Care;151
8.3.11; Conclusion;152
8.3.12;References;153
8.4;6 Potential Impact of Genomic Information on Childhood Sibling Relationships;159
8.4.1; Introduction;159
8.4.2; Research Background and Scope of the Problem;160
8.4.3; A Comparison of Disorders: Autosomal and X Linked;163
8.4.3.1; Siblings of Children with AT;163
8.4.3.1.1; Study of Siblings of Children with AT;164
8.4.3.1.2; Understanding of Genetic Information and Perception of Carrier Status;164
8.4.3.1.3; Family Communication;165
8.4.3.1.4; Sibling Guilt;165
8.4.3.1.5; Case Example -- Sibling of Individuals with AT;166
8.4.3.2; Siblings of Children with XSCID;166
8.4.3.2.1; Study of Siblings of Children with XSCID;167
8.4.3.2.2; Understanding of Genetic Information and Perception of Carrier Status;167
8.4.3.2.3; Family Communication;168
8.4.3.2.4; Sibling Relationships;168
8.4.3.2.5; Sibling Guilt;168
8.4.3.2.6; Parental Mourning;169
8.4.3.2.7; Case Example -- Sibling of Males with XSCID;169
8.4.3.3; Comparisons Between CF, AT, and XSCID: Key Similarities and Differences;169
8.4.4; Siblings as Bone Marrow and Stem Cell Donors;170
8.4.4.1; Case Example;172
8.4.4.2; Preparation: Assessment and Interventions;173
8.4.4.3; Pre-implantation Genetic Diagnosis;173
8.4.5; Summary and Conclusion;174
8.4.6;References;175
8.5;7 Family Communication of Genomic Information;180
8.5.1; Introduction;180
8.5.2; Family Communication as Process;183
8.5.3; Communication Barriers and Facilitators;185
8.5.3.1; Disease Factors;185
8.5.3.1.1; Inheritance Pattern;185
8.5.3.1.2; Disease Severity and Preventability;187
8.5.3.1.3; Certainty of Test Results;187
8.5.3.2; Individual Factors;188
8.5.3.2.1; Emotions;188
8.5.3.2.2; Coping Strategies;188
8.5.3.3; Family Factors;189
8.5.3.3.1; Type of Relationship;189
8.5.3.3.2; Family Communication Between Parents and Children;189
8.5.3.3.3; Family Communication Style;191
8.5.3.3.4; Family Myths About Inheritance;192
8.5.3.4; Sociocultural Factors;192
8.5.3.4.1; Gender;192
8.5.3.4.2; Concerns About Genetic Discrimination;193
8.5.3.4.3; Culture;194
8.5.4; Functions of Communication;195
8.5.4.1; To Convey Information;195
8.5.4.2; To Facilitate Coping;196
8.5.4.3; To Create or Maintain Identity;196
8.5.5; Future Directions;197
8.5.6;References;201
8.6;8 Conveying Genetic Risk to Teenagers;207
8.6.1; Illness Perceptions: The Role Of Causality;208
8.6.2; Challenges Of Conveying Risk To Youth;209
8.6.3; Understanding Of And Outcomes Related To Risk Communication;212
8.6.4; Probabilistic Approaches To Conveying Risk: The Role Of Numeracy;214
8.6.5; Strategies In The Use Of Numerical Data To Convey Probabilistic Risk Information;216
8.6.6; The Use Of Graphical Displays As Adjuncts To Conveying Numerical Probabilistic Risk Information;219
8.6.7; Incorporation Of Probabilistic Information With Other Risk Communication Approaches;220
8.6.8; Suggested Areas For Future Research;224
8.6.9; Concluding Statements;227
8.6.10;References;228
9;Part III Genes, Behavior, and Health;234
9.1;9 Prenatal Screening and Diagnosis;235
9.1.1; Introduction;235
9.1.2; History And Current Status Of Prenatal Screening And Diagnosis;236
9.1.2.1; Genetic Carrier Screening;237
9.1.2.2; Non-invasive Screening in Pregnancy;238
9.1.2.3; Invasive Diagnostic Testing;239
9.1.3; Factors That Impact Whether To Undergo Prenatal Testing;240
9.1.4; The Genetic Counseling Process;245
9.1.5; Recieving Bad NewsAnd The Subsequent Decision Making;246
9.1.5.1; Psychological Reactions to Abnormal Prenatal Diagnosis;246
9.1.5.2; The Decision to Continue the Pregnancy;247
9.1.5.3; The Decision to Terminate the Pregnancy;248
9.1.6; Professional Issues For Future Consideration;248
9.1.7; Conclusions;249
9.1.8;References;250
9.2;10 Single Gene Disease Risk;255
9.2.1; Introduction;255
9.2.2; Patient Adaptation;257
9.2.3; Parent And Family Adaptation;259
9.2.3.1; Psychological Implications for Mothers;260
9.2.3.2; Impact on Reproductive Decision Making;260
9.2.4; Implications Of Delayed Diagnosis;261
9.2.5; Newborn Screening;263
9.2.5.1; Medical and Developmental Outcome for the Child;265
9.2.5.2; Psychosocial Implications for Family;267
9.2.5.3; Psychosocial Implications for Patients;269
9.2.5.4; Implications for Reproductive Decision Making;271
9.2.5.5; Future Challenges;271
9.2.6; Future Directions;273
9.2.7;References;276
9.3;11 Hereditary Cancer Risk;281
9.3.1; Hereditary Cancers, Cancer Syndromes, And Conditions Featuring Malignancies Affecting Children;282
9.3.1.1; Nonsyndromic Cancers;282
9.3.1.2; Chromosome Instability Syndromes;289
9.3.1.3; Other Genetic Conditions with Malignancy Risks;289
9.3.1.4; Hereditary Cancer Syndromes Affecting Children;291
9.3.2; Hereditary Cancer Syndromes Generally Manifesting In Adulthood;292
9.3.2.1; Psychosocial Research;293
9.3.2.1.1; Childhood Onset;293
9.3.2.1.2; Adult Onset;296
9.3.3; Predictive Genetic Testing In Children;299
9.3.4; Future Directions;301
9.3.5;References;301
9.4;12 Type 1 Diabetes Risk;306
9.4.1; The Genetics and Natural History of Type 1 Diabetes;307
9.4.2; Genetic Testing for T1D: Ethical Issues;309
9.4.3; Psychosocial Impact of T1D Genetic Testing;309
9.4.3.1; Cognitive Impact of T1D Genetic and ICA Testing: Understanding T1D Risk;310
9.4.3.2; Emotional Impact of T1D Genetic and ICA Testing: Anxiety, Worry, and Depression;312
9.4.3.3; Behavioral Impact of T1D Genetic and ICA Testing: Surveillance and Disease Prevention;317
9.4.3.4; Reactions to Study Participation: Satisfaction and Burden;317
9.4.4; Implications for Patient Care, Research, and Health Policy;318
9.4.4.1; Patient Care;318
9.4.4.2; Future Research;319
9.4.4.3; Health Policy;320
9.4.5;References;321
9.5;13 Cardiovascular Disease Risk;325
9.5.1; Introduction;325
9.5.2; Background And Significance: Atherosclerosis And Its Risk Factors: The Precursors To Cad;325
9.5.3; Genetics Of Lipid Metabolism;327
9.5.4; Obesity And The Risk For Heart Disease;329
9.5.5; Environmental Factors Of Cardiovascular Disease Risk;331
9.5.5.1; Participation in Physical Activity;331
9.5.5.2; Dietary Trends;331
9.5.5.3; Tobacco Use;333
9.5.6; Children/Adolescent/Family Social, Psychological, And Behavioral Issues;333
9.5.7; Conclusions;334
9.5.8;References;335
9.6;14 Obesity Risk;340
9.6.1; Introduction;340
9.6.2; Energy Balance And The Development Of Childhood Obesity;341
9.6.3; Familial Transmission Of Obesity;341
9.6.4; Heritability Of Obesity;342
9.6.5; Can Obesity-Promoting Eating Behaviors And Preferences Be Inherited;343
9.6.6; High-Risk Research Designs To Study Eating Traits Contributing To Childhood Obesity;343
9.6.6.1; Overview of High-Risk Design;343
9.6.6.2; The Infant Growth Study;344
9.6.6.3; Twins Early Development Study )TEDS);346
9.6.7; Specific Genetic Associations With Obesity Risk And Eating Behavior;347
9.6.8; Emotional Eating And Obesity;347
9.6.9; Translating Genetic Information About Obesity Risk Into Treatment And Prevention: The Case Of Genetic Testing;348
9.6.10; Conclusions;349
9.6.11;References;350
9.7;15 Tobacco and Alcohol Use Behaviors;355
9.7.1; Background;355
9.7.1.1; Epidemiology;355
9.7.1.2; Within-Individual Clustering of Disorders;356
9.7.1.3; Family Effects and Familial Clustering;356
9.7.1.4; Morbidity, Mortality, and Costs to Society;357
9.7.1.5; Summary;357
9.7.2; Approaches to Gene Discovery;358
9.7.2.1; Heritability;358
9.7.2.2; Approaches in the Search for Genetic Contributors;359
9.7.2.2.1; Linkage Approach;359
9.7.2.2.2; Candidate Gene Approach;360
9.7.2.2.3; Whole Genome Association Approach;360
9.7.3; Summary of Major Findings;361
9.7.3.1; Linkage Studies of Alcohol and Tobacco Phenotypes;361
9.7.3.2; Association (Candidate Gene and Whole Genome Association) Studies of Alcohol and Tobacco Phenotypes;361
9.7.3.2.1; Alcohol and Acetaldehyde Dehydrogenase Genes;362
9.7.3.2.2; -Aminobutyric Acid Receptor Genes;363
9.7.3.2.3; Nicotinic Receptor Genes;364
9.7.3.3; Summary;366
9.7.4; Promise of Future Genetic Findings;366
9.7.4.1; Treatment Implications;366
9.7.4.2; Prevention/Genetic Susceptibility Testing;368
9.7.4.3; Unintended Consequences;369
9.7.5; Conclusion;369
9.7.6;References;370
9.8;16 Childhood Neuropsychiatric Risk;378
9.8.1; Introduction;378
9.8.2; Background and Significance;379
9.8.3; Attention Deficit Hyperactivity Disorder (ADHD);381
9.8.3.1; Family Studies;381
9.8.3.2; Candidate Genes;381
9.8.3.3; Genomic Studies;382
9.8.3.4; Gene--Environmental Interactions;382
9.8.3.5; ADHD: Developmental Phenotype;384
9.8.3.6; Pharmacogenetics;384
9.8.3.7; Summary and Psychosocial Implications;386
9.8.4; Obsessive-Compulsive Disorder (OCD);386
9.8.4.1; Family Studies;386
9.8.4.2; Candidate Genes;386
9.8.4.3; Genomic Studies;387
9.8.4.4; Gene--Environmental Interactions;387
9.8.4.5; OCD Developmental Phenotype;388
9.8.4.6; Pharmacogenetics;388
9.8.4.7; Summary and Psychosocial Implications;388
9.8.5; Schizophrenia;388
9.8.5.1; Family Studies;389
9.8.5.2; Candidate Genes;389
9.8.5.3; Genomic Studies;390
9.8.5.4; Developmental Phenotype;391
9.8.5.5; Gene--Environmental Interactions;391
9.8.5.6; Pharmacogenetics;391
9.8.5.7; Summary and Psychosocial Implications;392
9.8.6; Pervasive Developmental Disorders;392
9.8.6.1; Family Studies;393
9.8.6.2; Candidate Genes;393
9.8.6.3; Genomic Studies;394
9.8.6.4; Gene--Environmental Interactions;394
9.8.6.5; Summary and Psychosocial Implications;394
9.8.7; Forecasting;395
9.8.7.1; Promises of Genetic Advances;395
9.8.7.2; Ethical Considerations;395
9.8.8; Translation;396
9.8.8.1; Genetic Counseling;396
9.8.8.2; Genetic Testing;397
9.8.8.3; Pharmacogenetic Testing;398
9.8.8.4; Privacy of Genetic Information;398
9.8.9; Conclusion;399
9.8.10;References;399
9.9;17 Genomic Risk Information for Common Health Conditions: Maximizing Kinship-Based Health Promotion;415
9.9.1; Genetic Risk Information: Tools of Today and Tomorrow;418
9.9.1.1; Family Health History;418
9.9.1.2; Genetic Susceptibility Testing for Common Health Conditions;420
9.9.1.3; Opportunities and Challenges Raised by Genetic Risk Assessments;421
9.9.2; Genetic Risk Information as Part of Kinship-Based Health Promotion Efforts;423
9.9.2.1; Considering Naturally Occurring Risk Synergies;424
9.9.3; Future Research Needs;428
9.9.3.1; Capitalizing on the Kinship Social Structure to Promote Health;430
9.9.3.2; Evaluation of Genetics-Informed Intervention Programs to Improve Health;431
9.9.3.3; Development of Statistical Methods for Kinship Networks;432
9.9.4; Conclusions;434
9.9.5;References;435
10;Part IV Emerging Issues;442
10.1;18 Pediatric Pharmacogenomics;443
10.1.1; Background;444
10.1.2; Pharmacogenetics in Asthma Treatment;447
10.1.2.1; Asthma Steroid Pharmacogenetics;447
10.1.2.2;-Adrenergic Receptor Gene in Asthma Treatment;448
10.1.2.3; Leukotriene Response in Asthma Treatment;449
10.1.2.4; Pharmacogenetics in Attention-Deficit Hyperactivitiy Disorder;450
10.1.2.5; Pharmacogenetics in Childhood Leukemia;451
10.1.2.6; Translation and Challenges in Pharmacogenetics;452
10.1.2.7; Gene Therapy;454
10.1.3; Applying Pharmacogenomics in Medication Management for Pediatric Chronic Conditions: Psychological Aspects;455
10.1.4; Involving Families in Decision Making Regarding Personalized Treatment;455
10.1.5; Engaging Families in Adherence Promotion;456
10.1.6; Evaluating Treatment Adherence in Research and Clinical Care;457
10.1.7; Conclusion;457
10.1.8;References;458
10.2;19 Informed Consent and the Protection of Human Subjects in Genomic Research with Children and Families;463
10.2.1; Pediatric Research Initiatives;464
10.2.2; The Bioethics of Protection of Children in Clinical Research;465
10.2.2.1; Historical Perspectives;466
10.2.2.2; Enrollment of Children in Research;466
10.2.2.2.1; The Child's Role in the Research Enrollment Process;466
10.2.2.3; Parental Decision Making and Research;469
10.2.3; Current State of Pediatric Genetic Testing Under Research Initiatives;471
10.2.3.1; Newborn Screening;471
10.2.3.2; Genetic Studies in Symptomatic Children;472
10.2.3.3; Genetic Studies in Children with No Genetic Risk Factors;473
10.2.4; Ethical Issues About Genetic Testing in Children;473
10.2.4.1; Research into Risks Involved in Genetic Assessment in Children;475
10.2.4.2; Factors Affecting Parental Enrollment Decisions;477
10.2.4.3; Genetic Testing of Children;478
10.2.4.4; Familial Sharing of Genetic Information;478
10.2.5; Discussion;478
10.2.6; Conclusion;484
10.2.7;References;484
10.3;20 Ethical, Legal and Social Issues in the Genetic Testing of Minors;490
10.3.1; Introduction;490
10.3.2; Ethical Standards For Genetic Testing;493
10.3.2.1; Children and Adults;493
10.3.2.2; Special Standards for Adolescents?;495
10.3.2.3; Balancing of Ethical Principles;496
10.3.2.4; The Entanglement of Family and Child Benefits;496
10.3.2.5; Justice;497
10.3.2.6; Informing About Genetic Risks;498
10.3.3; Newborn Screening;498
10.3.4; Carrier Testing And Carrier Screening;501
10.3.4.1; Carrier Testing of Individual Children;503
10.3.4.2; Carrier Screening Programs for Minors;506
10.3.5; Ethical Problems In Predictive Genetic Testing For Diseases With Childhood Onset Where No Treatment Or Prevention Exists;508
10.3.6; Ethical Problems In Predictive Testing Of Children For Diseases With Childhood Onset For Which Medical Interventions Are Available;509
10.3.7; Predictive Testing Of Minors For Adult-Onset Diseases;511
10.3.7.1; The Ethical Dilemma;511
10.3.7.2; Conflicting Interests of Parents and Their Children;517
10.3.8; Future Developments And Conclusions;518
10.3.9;References;519
10.4;21 Guidelines and Policies on Genetic Testing in Children and Families;527
10.4.1; Background;528
10.4.1.1; Genetic Testing in Children for Diagnostic Purposes and Medical Management;529
10.4.1.2; Genetic Assessment Through Newborn Screening;530
10.4.1.3; Carrier Screening During Childhood and Within Families;532
10.4.1.4; Presymptomatic and Susceptibility Testing for Inherited Disease and Disorders;533
10.4.1.5; Genomic Testing for Common, Complex Disorders: Considerations for the Future;534
10.4.2; Research And Empirical Literature On Pediatric Genetic Testing;535
10.4.2.1; Reasons for Genetic Testing of Minors;535
10.4.2.2; Reasons for Deferring Genetic Testing of Children;536
10.4.2.3; Outcomes of Genetic Testing in Children;536
10.4.2.4; Attitudes Toward Genetic Testing;537
10.4.3; Us Task Forces And Committees Assessing Genetic Testing;537
10.4.3.1; National Institutes of Health -- Department of Energy Working Group on Ethical, Legal, and Social Implications of Human Genome Research;537
10.4.3.2; Institute of Medicine;538
10.4.3.3; National Institutes of Health -- Department of Energy (NIH-DOE) Task Force on Genetic Testing;541
10.4.3.4; Secretary's Advisory Committee on Genetic Testing (SACGT);541
10.4.3.5; Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS);542
10.4.4; Existing Guidelines And Practice Statements;543
10.4.5; Oversight And Regulation Of Genetic Testing;544
10.4.5.1; Oversight of Laboratories Conducting Genetic Testing;544
10.4.5.2; Oversight and Support for Programs Conducting Pediatric Genetic Testing;546
10.4.5.3; Legislative Efforts and Regulatory Actions;548
10.4.6; Challenges;549
10.4.7; Conclusions;552
10.4.8;Appendix;553
10.4.8.1;Case Scenario 1;553
10.4.8.1.1; Pediatric Genetic Testing for Diagnostic and Medical Management Purposes;553
10.4.8.2;Case Scenario 2;554
10.4.8.2.1; Carrier Testing;554
10.4.8.3;Case Scenario 3;555
10.4.8.3.1; Presymptomatic Testing for Disease Potentially Presenting During Childhood;555
10.4.8.4;Case Scenario 4;556
10.4.8.4.1; Presymptomatic Genetic Testing for Adult-Onset Disease During Childhood;556
10.4.8.5;Case Scenario 5;558
10.4.8.5.1; Genetic Testing for Obesity: A Challenge for the Future;558
10.4.8.6;References;559
10.5;22 Training, Practice, and Collaboration:New Opportunities for Pediatric Psychologyand Genomic Medicine;562
10.5.1; Introduction;562
10.5.2; How is Genetic Information Different;564
10.5.3; How is Genetic Information Regarding Children Different;566
10.5.4; The Roles for Pediatric Psychologists;568
10.5.5; What Competencies are Needed;569
10.5.5.1; Basic Genetics Concepts and Tools;570
10.5.5.2; Family History Taking and Pedigrees;571
10.5.5.3; Genetics Resources;572
10.5.5.3.1; Ethical Issues Concerning Children and Genetic Testing;572
10.5.5.4; Ethical Considerations in Pediatric Clinical Research;574
10.5.5.5; Biobanks and Children;575
10.5.6; Conclusions;575
10.5.7;References;576
10.6;23 Public Health Genomics;579
10.6.1; What is Public Health Genomics;580
10.6.2; Disclosure of Genetic Risk Information and Associated Health Decisions;581
10.6.3; Providing Informed Consent/Assent and the Need to Build our Knowledge Base;585
10.6.4; Impact of Early Environment on Gene Expression and Overall Health;586
10.6.5; Improved Phenotypes and Exposure Measurements;588
10.6.5.1; An Example: Pediatric Lipid Screening;590
10.6.6; Conclusion;591
10.6.7;References;592
11;Subject Index;596