Resources

Policy

American Academy of Pediatrics (Committee on Genetics)

Health Supervision for Children with Turner Syndrome
Health Supervision for Children with Neurofibromatosis
Newborn Screening Fact Sheets
Health Supervision for Children with Sickle Cell Diseases and Their Families
Health Supervision for Children with Down Syndrome
Prenatal Genetic Diagnosis for Pediatricians
Folic Acid for the Prevention of Neural Tube Defects
Health Supervision for Children with Achondroplasia
Health Supervision for Children with Fragile X Syndrome
Health Supervision for Children with Marfan Syndrome
Maternal Phenylketonuria
Issues in Newborn Screening
Newborn Screening for Congenital Hypothyriodism: Recommended Guidelines

American Academy of Pediatrics (Committee on Children with Disabilities)

General Principles in the Care of Children and Adolescents with Genetic Disorders and Other Chronic Health Conditions

American College of Medical Genetics

Prenatal Interphase Fluorescence In Situ Hybridization (FISH) Policy Statement
ACMG Position Statement on Multiple Marker Screening in Women 35 and Older
Fragile X Syndrome: Diagnostic and Carrier Testing
Statement on Storage and Use of Genetic Materials
Statement on Multiple Marker Screening in Pregnant Women
Statement on Nutritional Supplements and Piracetam for Children with Down Syndrome
Statement on Guidance for Genetic Counseling in Advanced Paternal Age
Statement on Use of Apolipoprotein E Testing for Alzheimer Disease
ASHG/ACMG Report: Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents
Diagnostic Testing for Prader-Willi and Angelman Syndromes: Report of the ASHG/ACMG Test and Technology Transfer Committee
Folic Acid and Pregnancy
Statement on Population Screening for BRCA-1 Mutation in Ashkenazi Jewish Women
Principles of Screening: Report of the Subcommittee on Screening of the American College of Medical Genetics Clinical Practice Committee
Statement on Folic Acid: Fortification and Supplementation
Position Statement on Carrier Testing for Canavan Disease
Statement on Genetic Testing for Cystic Fibrosis

American College of Obstetrics and Gynecologists (ACOG): (Committee on Genetics)

Current Status of Cystic Fibrosis Carrier Screening: MISSING FROM LIBRARY’s ACOG BINDER (OUT OF PRINT)
Chorionic Villus Sampling
Fragile X Syndrome
Screening for Tay-Sachs Disease
Genetic Screening for Hemoglobinopathies
Breast-Ovarian Cancer Screening: MISSING FROM LIBRARY’s ACOG BINDER (OUT OF PRINT)
Genetic Evaluation of Stillbirths and Neonatal Deaths: MISSING FROM LIBRARY’s ACOG BINDER (OUT OF PRINT)
Routine Storage of Umbilical Cord Blood for Potential Future Transplantation
Advanced Paternal Age: Risks to the Fetus
Genetic Screening of Game Donors
Screening for Canavan Disease (MISSING FROM LIBRARY’s ACOG BINDER: ALSO AVAILABLE at Obset Gynecol Vol 92, No 5, at bindery until 6/20/99)

American College of Rheumatology (Council on Research)

Position Statement: Fetal Tissue Research

American Medical Association (Council on Ethical and Judicial Affairs)

Multiplex Genetic Testing
Genetic Testing of Children
Genetics Testing Legislation
Human Genome Project
Patenting the Human Genome
Gene Therapy
Genetic Counseling
Genetic Engineering
Genetic Testing by Employers
Insurance Companies and Genetic Information
Ethical Issues in Carrier Screening of Genetic Disorders
In Vitro Fertilization
Frozen Pre-Embryos
Pre-Embryo Splitting

American Public Health Association

Guidelines for Genetic Testing in Industry
Maternal Serum Alpha-Fetoprotein Screening
Bioproducts Released into the Environment
Regulation of Foods Derived from Genetically Engineered Plants
Genetics and Public Health
Preventing Birth Defects from Maternal Phenylketonuria

American Society of Clinical Oncology (Subcommittee on Genetic Testing for Cancer Susceptibility)

Genetic Testing for Cancer Susceptibility

American Society of Human Genetics

1994 ASHG Presidential Address: Who Are We? Where Are We Going? Anticipating the 21^st Century
Policy Statement for Maternal Serum Alpha-Fetoprotein Screening Programs and Quality Control for Laboratories Performing Maternal Serum and Amniotic Fluid Alpha-Fetoprotein Assays
DNA Banking and DNA Analysis: Points to Consider
Proposed ASHG Position on Mapping/Sequencing the Human Genome
Update on MSAFP Policy Statement from the American Society of Human Genetics
ASHG Statement on Cystic Fibrosis Screening
ASHG Social Issues Committee Report on Genetics and Adoption: Points to Consider
ASHG Statement on Clinical Genetics and Freedom of Choice
ASHG Position Paper on Patenting of Expressed Sequence Tags
ASHG Human Genome Committee Report: The Human Genome Project: Implications for Human Genetics
Statement of the ASHG on Cystic Fibrosis Carrier Screening
Statement of the ASHG on Genetic Testing for Breast and Ovarian Cancer Predisposition
Genetic Testing and Insurance
Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents
Statement on Use of Apolipoprotein E Testing for Alzheimer Disease
Statement on Informed Consent for Genetic Research
Recent Developments in Human Behavioral Genetics: Past Accomplishments and Future Directions
Professional Disclosure of Familial Genetic Information
Eugenics and the Misuse of Genetic Information to Restrict Reproductive Freedom
Response to National Bioethics Advisory Commission of the Ethical Issues and Policy Concerns Surrounding Research Using Human Biological Materials
Background Statement: Genetic Testing and Insurance (The Ad Hoc Committee on Genetic Testing/Insurance Issues)

Association of State and Territorial Health Officials

Policy Positions (October 1998): 50 page document, not directly on genetics

Council of State and Territorial Epidemiologists

Requested all 1998 position statements (not here yet)

Institute of Medicine

Assessing Genetic Risks: Implications for Health and Social Policy: Executive Summary

National Society of Genetic Counselors

Position Statements on:

Access to Care
Nondiscrimination
Confidentiality of Test Reports
Disclosure and Informed Consent
Cystic Fibrosis Screening
Genetic Screening

Resolutions on:

Reproductive Freedom
Prenatal Substance Abuse
Fetal Tissue Research
National Health Care Reform
Prenatal and Childhood Testing for Adult-Onset Disorders

Code of Ethics:

Section 1: Genetic Counselors Themselves
Section 2: Genetic Counselors and Their Clients
Section 3: Genetic Counselors and Their Colleagues
Section 4: Genetic Counselors and Society

Wertz and Fletcher (a statement by two professionals…not an organizational statement)

Proposed: An International Code of Ethics for Medical Genetics

Working Group on Ethical Issues in Umbilical Cord Banking

Consensus Statement: Ethical Issues in Umbilical Cord Blood Banking

PRIVATE/SUPPORT ORGANIZATIONS

American Heart Association

Impact of Laboratory Molecular Diagnosis on Contemporary Diagnostic Criteria for Genetically Transmitted Cardiovascular Diseases: Hypertrophic Cardiomyopathy, Lont-QT Syndrome, and Marfan Syndrome

Association of Retarded Citizens (ARC): Reports of the ARC’s Human Genome Education Project

An introduction to Genetics and Mental Retardation
Genetic Discrimination: Why Should We Care?
Genetic Testing, Screening, and Counseling: An Overview
Protecting Genetic Privacy

Council for Responsible Genetics (CRG)

Position Statement on Genetic Discrimination
A Proposed Model Law to Prevent Genetic Discrimination

Foundation on Economic Trends

Proposed Amendment to the National Institutes of Health Guidelines for Research Involving Recombinant DNA Molecules to Establish a Public Policy Advisory Committee
Petition to Amend the National Institutes of Health Guidelines for Research Involving Recombinant DNA Molecules to Establish a Public Policy Advisory Committee

Hereditary Disease Foundation

Statement on Protection Against Genetic Discrimination

Huntington’s Disease Society of America, Inc.

Guidelines for Genetic Testing for Huntington’s Disease

Little People of America

Position Statement on Genetic Discoveries in Dwarfism

National Action Plan on Breast Cancer (NAPBC)

(See also federal government section: NIH-DOE ELSI Working Group and NAPBC)
NAPBC National Biological Resource Banks Working Group Sunset Report (July 1998)
NAPBC Biological Resource Working Group Editorial Response to "Guardians of the Wax…and the Patient." Modern Pathology, 8(7): 699-700.
Consent Form for Use of Tissue for Research
How is Tissue Used for Research?
Recommendations on Genetic Information and the Workplace
Position Paper: Hereditary Susceptibility Testing for Breast Cancer

National Action Plan on Breast Cancer (NAPBC)

Public Responsibility in Medicine and Research (PRIM&R)

Applied Research Ethics National Association (ARENA)

National Cancer Institute (NCI)

NIH Office of Research on Women’s Health (ORWH)

Informed Consent and IRB Review: A Model for Review and Discussion

National Down Syndrome Congress

Position Statement of the National Down Syndrome Congress on Prenatal Testing and Eugenics: Families’ Rights and Needs

National Hemophilia Foundation

Statement of the National Hemophilia Foundation Concerning the Easing of Restrictions, Relating to Creutzfeldt-Jakob Disease, on Albumin and Albumin as an Excipient
Press Release: NHF Opposes New CJD Policy for Blood Supply
Statement on the Availability and Safety of Plasma Products

National Neurofibromatosis Foundation (Clinical Care Advisory Board)

The Diagnostic Evaluation and Multidisciplinary Management of Neurofibromatosis 1 and Neurofibromatosis 2

United Methodist Church’s General Board of Church and Society

Religious Leaders Oppose Patenting Genes and Animals

INTERNATIONAL SOCIETIES

Alzheimer’s Disease International (Medical and Scientific Advisory Committee)

Consensus Statement on Predictive Testing for Alzheimer Disease

Australian National Health and Medical Research Council (from Brody: The Ethics of Biomedical Research)

Statement on Human Experimentation and Supplementary Notes (see Supplementary Note 7: Somatic Cell Gene Therapy and Other Forms of Experimental Introduction of DNA and RNA into Human Subjects)

British Committee on the Ethics of Gene Therapy (from Brody: The Ethics of Biomedical Research)

Summary of Main Conclusions and Recommendations on the Ethics of Gene Therapy (1989)

British Society for Human Genetics

Co-ordinated Arrangements for Genetic Testing for Rare Disorders
The Genetic Testing of Children: Report of a Working Party of the Clinical Genetics Society
Statement on Genetics and Life Insurance
Patenting of Human Gene Sequences and the EU Draft Directive
BSHG Statement on Patenting and Clinical Genetics

Canadian College of Medical Geneticists

Policy Statement Concerning DNA Banking and Molecular Genetic Diagnosis
China’s Eugenics Law: A Position Statement of the Canadian College of Medical Geneticists

Council of Europe (from Brody: The Ethics of Biomedical Research)

Recommendations Concerning Medical Research on Human Beings
Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine
Scientific Research and/or Experimentation on Human Gametes, Embryos and Fetuses and Donation of Such Human Material
Recommendations on Genetic Testing and Screening for Health Care Purposes

Council for International Organizations of Medical Sciences (CIOMS)

The Declaration of Inuyama
International Ethical Guidelines for Biomedical Research Involving Human Subjects (from Brody: The Ethics of Biomedical Research)

European Medical Research Council (from Brody: The Ethics of Biomedical Research

Gene Therapy in Man

European Society of Human Genetics

Quality Guidelines and Standards for Genetic Laboratories/Clinics in Prenatal Diagnosis on Fetal Samples Obtained by Invasive Procedures: An Attempt to Establish a Common European Framework for Quality Assessment
Chinese Amend Policy on Sterilization for Genetic Reasons (REFERENCES TWO DOCS NOT AT UW)

German Government (from Brody: The Ethics of Biomedical Research)

German Embryo Protection Law (1990)

German Society of Human Genetics (Committee for Public Relations and Ethical Issues)

Statement on Prenatal Paternity Testing
Statement of the German Society of Human Genetics
Statement on Prenatal Diagnosis and Termination of Pregnancy
Statement on the Discovery of the Breast Cancer Gene BRCA1
Statement on Genetic Diagnosis in Children and Adolescents
Statement on the Prenatal Diagnosis of Sex
Statement on Postnatal Predictive Genetic Diagnosis
Statement on Population Screening for Heterozygotes

Health Departments of the United Kingdom (Gene Therapy Committee)

Writing Information Leaflets for Patients Participating in Gene Therapy Research

Health Sciences Council of Japan (from Brody: The Ethics of Biomedical Research)

Guidelines for Gene Therapy Clinical Research

Human Genetics Advisory Commission (British Organization)

The Implications of Genetic Testing for Insurance
The Implications of Genetic Testing for Life Insurance
Cloning Issues in Reproduction, Science, and Medicine (January 1998)
Cloning Issues in Reproduction, Science, and Medicine (December 1998)

Human Genome Organization (HUGO)

HUGO Statement on the Patenting of DNA Sequences
HUGO Ethics Committee: Statement on DNA Sampling: Control and Access
Statement on the Principled Conduct of Genetics Research: HUGO Ethical, Legal, and Social Issues Committee Report to HUGO Council
Statement by Chair of the Ethics Committee of HUGO: Status, Sale, and Patenting of Human Genetic Material: An International Survey

18^th International Congress of Genetics (Workshop on the Science and Ethics of Eugenics)

18^th International Congress of Genetics Statement on Eugenics (Summary)

King’s Fund Forum (London)

Consensus Statement: Screening for Fetal and Genetic Abnormality

Nuffield Council on Bioethics

Genetically Modified Crops: the Social and Ethical Issues
Mental Disorders and Genetics: the Ethical Context (summary)
Human Tissue: Ethical and Legal Issues (summary)
Genetic Screening: Ethical Issues (summary)
Animal-to-Human Transplants: the Ethics of Xenotransplantation (summary)

UNESCO (United Nations) International Bioethics Committee

Universal Declaration on the Human Genome and Human Rights
Article: UNESCO, Genetics, and Human Rights
Report on Human Gene Therapy
Report on Genetic Screening and Testing

World Federation of Neurology (Research Committee Research Group on Huntington’s Chorea, with representatives from the International Huntington Association)

Ethical Issues Policy Statement on Huntington’s Disease Molecular Genetics Predictive Test
Guidelines for the Molecular Genetics Predictive Test in Huntington’s Disease

World Health Organization (WHO)

Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services
WHO NCD Essential Norms and Standards: Human Genetics (PRINTED A LIST: NEED TO FIND THEM…NOT ON WEBPAGE: EMAILED DR VICTOR BOULYJENKOV, RESPONSIBLE OFFICER FOR WHO’S HUMAN GENETICS DIVISION OF NONCOMMUNICABLE DISEASES REQUESTING ALL GENETICS DOCS 5/28/99)
WHO Human Genetics Programme Publications (1990-1997): PRINTED A LIST OF DOCUMENTS: NEED TO FIND THEM…NOT AT HGN WEBLINK)

World Medical Association (from Brody: The Ethics of Biomedical Research)

Statement on Fetal Tissue Transplantation
Declaration on the Human Genome Project

REGIONAL GENETICS

Council for Regional Genetics Networks (CORN)

Guidelines for Clinical Genetics Services for the Public’s Health
Guidelines for the Retention, Storage, and Use of Residual Dried Blood Spot Samples after Newborn Screening Analysis: Statement of the Council of Regional Networks for Genetic Services

New England Regional Genetics Group (NERGG)

Position Statement: Carrier Testing for Canavan Disease

Southeastern Regional Genetics Group (SERGG)

Position Statement on Interphase in Situ Hybridization Prenatal Diagnosis

STATE GENETICS

California Department of Health Services: Genetic Disease Branch

List of Published Journal Articles

Nebraska Health and Human Services: Newborn Screening Program

Nebraska Human Genetic Technology Commission Final Report
Top Ten Pitfalls in Newborn Screening

Vermont Human Genetics Initiative

The Community Ethics Project

Vermont Newborn Screening Program

Responsibility for Ensuring That the Newborn Screening Test is Performed
"Refusal to Consent" Form

FEDERAL GOVERNMENT

CDC

CDC Guidelines for Hereditary Hemochromatosis
Newborn Screening for Cystic Fibrosis: A Paradigm for Public Health Genetics Policy Development

CDC Genetics Working Group

From Genes to Public Health: The Applications of Genetic Technology in Disease Prevention

Centers for Disease Control (CDC) and National Human Genome Research Institute (NHGRI) expert panel

Consensus Statement: Hereditary Hemochromatosis: Gene Discovery and Its Implications for Population-Based Screening

DOE Human Genome Program’s Human Genome News

Ethical Issues in Human Gene Therapy (LeRoy Walters)
Protecting Genetic Privacy: Why It is So Hard to DO (Mark Rothstein)
Genetics in the 21^st Century (Eric Lander)
The Human Genome Project: Science, Law, and Social Change in the 21^st Century: Reports from the Cambridge Symposium

Department of Health and Human Services

Statement on Genetic Discrimination by Donna Shalala, Secretary of Health and Human Services

Department of Health and Human Services and NIH

Guidelines for Research Involving Recombinant DNA Molecules
Recombinant DNA Research: Proposed Actions under Guidelines

FDA (Center for Biologics Evaluation and Research (CBER)

Points to Consider in Human Somatic Cell Therapy and Gene Therapy (1991)

National Cancer Institute

Confidentiality, Data Security, and Cancer Research: Perspectives from the National Cancer Institute

National Cancer Institute and National Center for Human Genome Research Workshop

Recommendations on Predictive Testing for Germ Line p53 Mutations Among Cancer-Prone Individuals

National Center for Human Genome Research (NCHGR) (from Brody: The Ethics of Biomedical Research)

Policy on Availability and Patenting of Human Genomic DNA Sequence Produced by NCHGR Pilot Projects

National Center for Human Genome Research (NCHGR)

NCHGR-DOE Guidance on Human Subjects Issues in Large-Scale DNA Sequencing

National Heart, Lung, and Blood Institute (NIH)

Report of the Special Emphasis Panel: Opportunities and Obstacles to Genetic Research in NHLBI Clinical Studies

National Human Genome Research Institute (NHGRI)

Policy Recommendations: Insurance Discrimination, Employment Discrimination, Privacy/Confidentiality
Genetic Information and the Workforce (by NHGRI, DHHS, EEOC, and Department of Justice)
Preparing Health Professionals for the Genetic Revolution (statement by Francis Collins)

National Human Genome Research Institute (NHGRI): Task Force and Workshop Reports

Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing (IN REFERENCE MANAGER, 180 pages!)
Genetic Testing for Cystic Fibrosis Consensus Development Conference Statement
Hereditary Hemochromatosis: Gene Discovery and Policy Meeting
Report of the Joint NIH/DOE Committee to Evaluate the Ethical, Legal, and Social Implications of the Human Genome Project
NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace
NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance
Protecting Human Research Subjects: 1993 OPPR IRB Guidebook Chapter on Human Genetic Research
NIH Workshop Statement: Reproductive Genetic Testing: Impact on Women
NIH Workshop Statement: Population Screening for the CF Gene
Consensus Statement: The Clinical Introduction of Genetic Testing for Alzheimer Disease: An Ethical Perspective

National Institute on Aging (Alzheimer’s Association Working Group)

Consensus Statement: Apolipoprotein E Genotyping in Alzheimer’s Disease

NIH-funded Cancer Genetics Studies Consortium: Task Force on Informed Consent

Consensus Statement: Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent

NIH-funded Cancer Genetics Studies Consortium

Recommendations for Follow-up Care of Individuals with an Inherited Predisposition to Cancer: I. Hereditary Nonpolyposis Colon Cancer
Recommendations for Follow-up Care of Individuals with an Inherited Predisposition to Cancer: II. BRCA1 and BRCAII

NIH-CDC Workshop

Consensus Statement: Informed Consent for Genetic Research on Stored Tissue Samples

NIH-DOE ELSI Working Group

The Bell Curve: Statement by the NIH-DOE Joint Working Group on the Ethical, Legal, and Social Implications of Human Genome Research

NIH-DOE ELSI Working Group: Task Force on Genetic Information and Insurance

Genetic Information and Health Insurance: Report of the Task Force on Genetic Information and Insurance

NIH-DOE ELSI Working Group and the National Action Plan on Breast Cancer (NAPBC)

Policy Forum: Genetic Information and the Workplace: Legislative Approaches and Policy Challenges
Government-Citizen Group Suggest Policies to Limit Genetic Discrimination in the Workplace
Genetic Discrimination and Health Insurance: An Urgent Need for Reform
Genetic Information and Health Insurance: State Legislative Approaches

Joint NIH/DOE Committee To Evaluate The Ethical, Legal, and Social Implications Program of the Human Genome Project

Full Report of the Joint NIH/DOE Committee To Evaluate The Ethical, Legal, and Social Implications Program of the Human Genome Project

NIH Human Embryo Research Panel (from Brody: The Ethics of Biomedical Research)

Report of the Human Embryo Research Panel (1994)

NIH (National Center for Human Genome Research)

National Advisory Council for Human Genome Research

Statement on Use of DNA Testing for Presymptomatic Identification of Cancer Risk

The Hastings Center Project on Priorities in the Clinical Application of Human Genome Research

Special Communication: National Policy Development for the Clinical Application of Genetic Diagnostic Technologies: Lessons from Cystic Fibrosis

NIH (National Human Genome Research Institute)

Consensus Statement: The Clinical Introduction of Genetic Testing for Alzheimer Disease

NIH Office of Medical Applications of Research

Consensus Conference: Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies

NIH Recombinant DNA Advisory Committee (RAC)

Recombinant DNA Research: Request for Public Comment on "Points to Consider in the Design and Submission of Human Somatic-Cell Gene Therapy Protocols": January 22, 1985
Amendments to Appendix M, The Points to Consider in the Design and Submission of Protocols for the Transfer of Recombinant DNA Molecules into the Genome of One or More Human Subjects
Recombinant DNA Research: Proposed Actions Under Guidelines
RAC Meeting Minutes: June 7-8, 1993
RAC Meeting Minutes: March 6-7, 1995
RAC Meeting Minutes: March 6-7, 1997
RAC Meeting Minutes: June 18-19, 1998
NIH Launches Discussion of In Utero Gene Therapy
RAC Confronts In Utero Gene Therapy Proposals

NIH Technology Assessment Panel on Gaucher Disease

Gaucher Disease: Current Issues in Diagnosis and Treatment

NIH Workshop on Population Screening for the Cystic Fibrosis Gene

Special Report: Statement from the National Institutes of Health Workshop on Population Screening for the Cystic Fibrosis Gene

National Institute of Mental Health (NIMH)

Genetics and Mental Disorders: Report of the NIMH Genetics Workgroup

National Performance Review (Clinton and Gore)

Reinventing the Regulation of Human Tissue (FDA)

National Research Council

NRC Oks Long-Delayed Survey of Human Genome Diversity
(Committee on DNA Forensic Science): The Evaluation of Forensic DNA Evidence (Excerpt from Executive Summary with recommendations)

Office for Protection from Research Risks (OPRR)

Human Subject Regulations Decision Charts
Privacy Protection for Research Subjects: "Certificates of Confidentiality"

Office of Technology Assessment

Genetic Screening and Monitoring in the Workplace : Chapter 1: Summary, Policy Issues, and Options for Congressional Action
Cystic Fibrosis: Chapter 1: Summary, Policy Issues, and Options for Congressional Action