Assessing genetic risks : implications for health and social policy

Assessing genetic risks implications for health and social policy

Detalles Bibliográficos
Otros Autores: Andrews, Lori B., 1952- (-)
Formato: Libro electrónico
Idioma:Inglés
Publicado: Washington, D.C. : National Academy Press 1994.
Edición:1st ed
Materias:
Medical genetics > Social aspects.
Human chromosome abnormalities > Diagnosis > Social aspects.
Medical policy > United States.
Ver en Biblioteca Universitat Ramon Llull:https://discovery.url.edu/permalink/34CSUC_URL/1im36ta/alma991009820335906719
Tabla de Contenidos:
  • ASSESSING GENETIC RISKS
  • Copyright
  • Preface
  • ADDITIONAL VIEWS OF THE CHAIRMAN
  • Acknowledgments
  • Contents
  • Executive Summary
  • PROMISE AND PROBLEMS IN GENETIC TESTING
  • COMMITTEE ON ASSESSING GENETIC RISKS
  • GENETIC TESTING AND ASSESSMENT
  • Newborn Screening
  • Carrier Identification
  • Prenatal Diagnosis
  • Testing for Late-Onset Disorders
  • Testing of Children or Minors
  • LABORATORY ISSUES IN GENETIC TESTING
  • Genetic Tests for Rare Disorders
  • CLIA88
  • Genetic Tests and the FDA
  • GENETIC COUNSELING
  • Basic Tenets of Genetic Counseling
  • Tailoring Counseling to the Client
  • PUBLIC EDUCATION
  • PROFESSIONAL EDUCATION
  • FINANCING OF GENETIC TESTING SERVICES
  • SOCIAL, LEGAL, AND ETHICAL ISSUES IN GENETIC TESTING
  • Voluntariness
  • Informed Consent
  • Confidentiality
  • Genetic Discrimination in Health Insurance
  • Genetic Discrimination in Employment
  • RESEARCH AND POLICY AGENDA
  • Policy Oversight
  • Research Policy
  • Need for Additional Standards
  • Policy Research Needs
  • 1 Setting the Stage
  • RECOMBINANT DNA TECHNOLOGY, GENE MAPPING, AND IDENTIFICATION OF DISEASE-RELATED GENES
  • Implications of Recombinant DNA Technology for Genetic Testing
  • Other Recent Advances and Their Implications for Genetic Testing
  • Limitations of Genetic Testing
  • LESSONS FROM THE PAST
  • Phenylketonuria
  • Sickle Cell Anemia and Trait
  • Tay-Sachs Disease and Trait
  • Thalassemia
  • UPDATING THE FINDINGS OF THE 1975 NAS COMMITTEE
  • Aims of Testing and Screening
  • Criteria for Testing
  • Quality of Testing
  • Conflicts of Interest
  • Pilot Studies
  • Auspices and Settings
  • Standards of Care
  • Age for Testing
  • Education of the Public
  • Ethical Issues
  • Allocation of Resources
  • Recognition of Human Diversity and Respect and Tolerance for People with Disabilities
  • REFERENCES
  • 2 Genetic Testing and Assessment.
  • BASIC HUMAN GENETICS AND GENETIC ANALYSIS
  • Technologies for Detecting Genetic Disorders
  • NEWBORN SCREENING
  • CARRIER TESTING AND SCREENING
  • PRENATAL DIAGNOSIS
  • Critical Issues in Prenatal Diagnosis
  • TESTING FOR LATE-ONSET DISORDERS
  • Monogenic Disorders of Late Onset
  • Huntington Disease
  • Alzheimer Disease
  • Hemochromatosis
  • Familial Hypercholesterolemia
  • Polycystic Kidney Disease
  • Inherited Susceptibility to Cancers
  • Testing for Multifactorial Genetic Disorders
  • Coronary Heart Disease
  • Hypertension
  • Cancers of Complex Origin
  • Diabetes
  • Rheumatoid Arthritis
  • Infectious Diseases
  • Psychiatric Diseases
  • CONCLUSIONS AND RECOMMENDATIONS
  • Newborn Screening
  • Carrier Testing and Screening
  • Prenatal Diagnosis
  • Testing for Late-Onset Disorders
  • REFERENCES
  • 3 Laboratory Issues in Human Genetics
  • PROGRAMS AND REGULATIONS FOR ASSESSING THE QUALITY OF LABORATORIES PROVIDING GENETIC TESTS
  • State Assessments of Laboratories Providing Genetic Tests
  • Voluntary Quality Assurance and Proficiency Testing in Genetics
  • Costs, Benefits, and Limitations of State and Voluntary Quality Assurance Programs
  • Federal Regulation of Clinical Laboratories
  • History
  • Laboratories Covered by CLIA88
  • CLIA88 Regulations
  • Genetic Tests Under CLIA88
  • Research Laboratories and Tests for Rare Disorders
  • Interpretation of Laboratory Test Results
  • ENSURING THE SAFETY AND EFFECTIVENESS OF NEW GENETIC TESTS
  • Premarket Approval of Medical Devices
  • Collection of Data for Test Validation
  • Humanitarian Exemptions
  • Investigational Use of New Devices
  • Institutional Review Boards and Genetic Tests
  • Inappropriate Use of Investigational Devices
  • NEWBORN AND OTHER GENETIC SCREENING PROGRAMS
  • FINDINGS AND RECOMMENDATIONS
  • Ensuring the Quality of Laboratories
  • Ensuring the Safety of New Tests
  • REFERENCES.
  • 4 Issues in Genetic Counseling
  • BASIC COMPONENTS OF GENETIC COUNSELING
  • Awareness of the Impediments to Effective Genetic Counseling
  • Nondirectiveness
  • Informed Consent
  • Confidentiality
  • Communicating Risks and Dealing with Uncertainty
  • Recognizing Social and Cultural Differences
  • THE CONTEXTS OF GENETIC COUNSELING
  • Newborn Screening
  • Determining Carrier Status
  • Prenatal Diagnosis
  • Screening for Late-Onset Disorders
  • Multiplex Testing
  • NEED FOR A MORE GENETICALLY LITERATE PUBLIC
  • CONCLUSIONS AND RECOMMENDATIONS
  • Components of Genetic Counseling
  • Providing Genetic Counseling
  • The Contexts of Genetic Counseling
  • Newborn Screening
  • Determining Carrier Status
  • Prenatal Diagnosis
  • Screening for Late-Onset Disorders
  • Multiplex Testing
  • NOTES
  • REFERENCES
  • 5 Public Education in Genetics
  • BARRIERS TO OVERCOME
  • WHAT DO PEOPLE KNOW?
  • WHAT IS GENETICS EDUCATION?
  • Formal Genetics Education
  • Genetics Education for the Future
  • DNA Learning Center
  • Biological Sciences Curriculum Study
  • Project Genethics
  • University of Kansas Medical Center
  • Informal Educational Interventions
  • PUBLIC HEALTH EDUCATION
  • BENEFITS AND BURDENS OF GENETICS KNOWLEDGE
  • FINDINGS AND RECOMMENDATIONS
  • NOTES
  • REFERENCES
  • 6 Personnel Issues in Human Genetics
  • GENETIC SPECIALISTS
  • Background Data on Genetics Professionals
  • Training Programs
  • Master's-Level Genetic Counselors
  • Non-Master's-Level Counselors
  • Certification and Accreditation of Genetics Specialists
  • Related Genetics Certification and Training: Cytogenetics
  • GENETICS INSTRUCTION IN MEDICAL SCHOOLS
  • Continuing Medical Education
  • Professional Statements, Guidance, and Proficiencies
  • OTHER HEALTH PROFESSIONALS
  • Nurses in Genetics
  • Social Workers in Genetics
  • Public Health
  • FINDINGS AND RECOMMENDATIONS
  • NOTE
  • REFERENCES.
  • 7 Financing of Genetic Testing and Screening Services
  • WHO PAYS FOR GENETIC TESTING AND COUNSELING?
  • PRIVATE SOURCES OF PAYMENT FOR GENETICS SERVICES
  • Self-Insurance by Employers
  • Key Health Insurance Policy Barriers to Reimbursement for Genetics Services
  • Survey of Attitudes of Health Insurers About the Use of Genetic Information
  • The Impact of CPT Codes on Reimbursement
  • PUBLIC SOURCES OF PAYMENT FOR GENETICS SERVICES
  • Medicare
  • Medicaid
  • CHAMPUS
  • State Genetics Services Programs
  • Federal Support for Genetics Services Programs
  • RECOMMENDATIONS
  • NOTES
  • REFERENCES
  • 8 Social, Legal, and Ethical Implications of Genetic Testing
  • KEY DEFINITIONS
  • Autonomy
  • Ethical Analysis
  • Legal Issues
  • Privacy
  • Ethical Analysis
  • Legal Issues
  • Confidentiality
  • Ethical Analysis
  • Legal Issues
  • Equity
  • Ethical Analysis
  • Legal Issues
  • CURRENT PRACTICE OF PROTECTION IN GENETICS
  • APPLYING THE PRINCIPLES TO GENETIC TESTING
  • ISSUES IN GENETIC TESTING
  • Autonomy
  • Special Issues in the Screening and Testing of Children
  • Voluntariness of Subsequent Uses
  • Confidentiality
  • Disclosing Genetic Information to Spouses
  • Disclosing Genetic Information to Relatives
  • Confidentiality and Discrimination When Third Parties Seek Genetic Information
  • FINDINGS AND RECOMMENDATIONS
  • Overall Principles
  • Autonomy
  • Informed Consent
  • Multiplex Testing
  • Voluntariness
  • Screening and Testing of Children
  • Subsequent Uses
  • Confidentiality
  • Disclosure to Spouses and Relatives
  • Discrimination in Insurance and Employment
  • NOTES
  • 9 Research and Policy Agenda
  • POLICY OVERSIGHT FOR GENETIC TESTING AND SCREENING
  • National Policy Oversight
  • National Advisory Committee and Working Group
  • State Oversight: Role of State Commissions
  • Research Policy for Studies Involving Genetic Testing.
  • NEED FOR ADDITIONAL STANDARDS FOR GENETIC TESTING
  • Prenatal Diagnosis
  • Predispositional Genetic Testing and Screening
  • Testing of Minors
  • Multiplex Testing
  • RESEARCH NEEDS
  • Assessment of ELSI Research and Policy Studies
  • Pilot Studies
  • Laboratory Quality Assurance
  • Genetics Knowledge and Attitudes of Health Professionals
  • Genetics Education and Counseling
  • Informed Consent
  • Psychosocial Factors in Genetic Testing
  • Culturally Appropriate Genetic Testing and Counseling
  • Development of Balanced Materials on Genetic Disorders
  • Measuring the Effectiveness of Genetic Education and Counseling
  • Public Education
  • Computer Innovation in Genetics Education
  • Cost-Effectiveness Analysis of Genetic Testing
  • CRITICAL DEFICIENCIES IN DATA ON GENETICS SERVICES
  • RESEARCH ON POPULATION GENETICS
  • REFERENCES
  • APPENDIX A Workshop Participants
  • PARTICIPANTS IN THE FEBRUARY 1992 WORKSHOP ON LABORATORY ISSUES IN GENETICS
  • PARTICIPANTS IN THE JUNE 1992 WORKSHOP ON ISSUES IN GENETIC SERVICES
  • PARTICIPANTS IN THE SEPTEMBER 1992 MINI-WORKSHOPS ON GENETIC COUNSELING
  • PUBLIC EDUCATION
  • PRIVACY AND INSURANCE
  • PARTICIPANTS IN THE SEPTEMBER 1992 PUBLIC FORUM ON ASSESSING GENETIC RISKS: ISSUES AND IMPLICATIONS FOR HEALTH
  • APPENDIX B Committee Biographies
  • Index.

Ejemplares similares