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100 1  Andrews, Lori B 
245 10 Assessing Genetic Risks :|bImplications for Health and 
       Social Policy 
264  1 Washington, D.C. :|bNational Academies Press,|c1994 
264  4 |c©1994 
300    1 online resource (352 pages) 
336    text|btxt|2rdacontent 
337    computer|bc|2rdamedia 
338    online resource|bcr|2rdacarrier 
505 0  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 
505 8  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 
505 8  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 
505 8  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 
505 8  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 
588    Description based on publisher supplied metadata and other
       sources 
590    Electronic reproduction. Ann Arbor, Michigan : ProQuest 
       Ebook Central, 2020. Available via World Wide Web. Access 
       may be limited to ProQuest Ebook Central affiliated 
       libraries 
650  0 Medical genetics -- Social aspects.;Human chromosome 
       abnormalities -- Diagnosis -- Social aspects.;Medical 
       policy -- United States 
655  4 Electronic books 
700 1  Fullarton, Jane E 
700 1  Holtzman, Neil A 
700 1  Motulsky, Arno G 
700 1  Risks, Committee on Assessing Genetic 
700 1  Medicine, Institute of 
776 08 |iPrint version:|aAndrews, Lori B.|tAssessing Genetic 
       Risks : Implications for Health and Social Policy
       |dWashington, D.C. : National Academies Press,c1994
       |z9780309047982 
856 40 |uhttps://ebookcentral.proquest.com/lib/sinciatw/
       detail.action?docID=3376113|zClick to View