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Professional policy papers | Ethical, Legal, Public Policy | Testing / Insurance / Privacy / Nondiscrimination |  Health Insurance Portability | American with Disabilities Act | Birth Defects Prevention Act | Courses | Ethics Centers | Other

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Policy papers on specific issues, professional societies

  • American Society of Human Genetics (ASHG) policy papers on Maternal Serum Alpha-Fetoprotein Screening, DNA Analysis, Cystic Fibrosis, Genetics and Adoption, Cystic Fibrosis Carrier Screening. Genetic Testing for Breast and Ovarian Cancer, Testing in Children and Adolescents, Apolipoprotein E Testing for Alzheimer Disease, Disclosure of Familial Genetic Information, Eugenics, and other Genetic Testing Issues , other policy sites
  • American College of Medical Genetics (ACMG) policy papers on Prenatal FISH Studies, Multiple Marker Screening in Women 35 and Older, Fragile X Syndrome Testing, Advanced Paternal Age, Apolipoprotein E Testing for Alzheimer Disease, Testing in Children and Adolescents, Testing for Prader-Willi and Angelman Syndromes, Population Screening for BRCA-1 Mutation in Ashkenazi Jewish Women, Principles of Screening, Carrier Testing for Canavann Disease , Genetic Testing for Cystic Fibrosis, and other testing issues
  • German Society for Human Genetics Statements and Declarations and Position Paper
  • American Society of Gene Therapy policy / position statements
  • American Academy of Pediatrics, genetic policy statements - Congenital Adrenal Hyperplasia, Evaluation of the Newborn with Developmental Anomalies of the External Genitalia, Folic Acid for the Prevention of Neural Tube Defects, Health Supervision for Children with Achondroplasia, Health Supervision for Children with: Down Syndrome, Fragile X Syndrome, Marfan Syndrome, Neurofibromatosis, Sickle Cell Disease, Turner Syndrome, Williams Syndrome; Maternal Phenylketonuria, Molecular Genetic Testing in Pediatric Practice, Newborn Screening Fact Sheets, Newborn Screening for Congenital Hypothyroidism, Prenatal Genetic Diagnosis for Pediatricians, Genetic Disorders and Birth Defects: Compendium of AAP Guidelines for the Primary Care Practitioner (book)
  • Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working Group, HNPCC, CYP450, other New 2008 2008
  • HumGen, international genetic policy information from professional organizations, GenBiblio, BM Knoppers, University of Montreal, discrimination, genetic testing, screening, gene therapy, DNA banking, gene patenting New
  • Genetic Education Materials (GEM) Database, search, public health genetics policies, clinical genetics educational materials, National Newborn Screening and Genetics Resource Center (NNSGRC) New
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    Resources on ethics / legal issues / public policy

    Genetic Testing / Insurance / Privacy / Nondiscrimination

  • Clairvoyance and Caution: Repercussions from the Human Genome Project, NS Wexler, HD Foundation and The Code of Codes: Scientific and Social Issues in the Human Genome Project. D.J. Kevles and L. Hood (Eds) Harvard University Press, 1992, 211-243.
  • Critical Decisions: Genetic Testing and Its Implications, Statement, Committee on Science and Human Values of the National Conference of Catholic Bishops
  • Consumer Coalition for Health Privacy, Georgetown University, fact sheets, policy issues 202-687-0331, sanderss@gunet.georgetown.edu
  • Employment and genetic testing, Kansas Senate Bill No. 22, in effect July 1, 1999, supplement, fiscal note
  • Ethical Issues With Genetic Testing in Pediatrics, American Academy of Pediatrics, Pediatrics Vol 107(6) June 2001, pp 1451-1455
  • Genetic Discrimination / Employment - National Center for Genome Resources Survey 03/04/98; 85% of Americans think employers should be prohibited from obtaining information about an individual's genetic conditions, risks and predispositions. 69% think health insurers and life insurers should be barred from accessing genetic information: (keyword search) or search here
  • Genetic Information and Health Insurance Enacted Legislation, nondiscrimination employment legislation by state and nondiscrimination insurance legislation by state, updated regularly, Policy, Education & Outreach Branch, National Human Genome Research Institute (NHGRI/NIH) New 2007
  • Genetic Information and Health Insurance: State Legislative Approaches, Rothenberg KH, 23 Journal of Law, Medicine & Ethics 312 (1995) with supplemental chart by B Fuller, University of Maryland School of Law
  • The Genetic Privacy Act and Commentary, George Annas, Leonard Glantz, & Patricia Roche - summary from newsletter
  • Genetic Test Information Fears Unfounded, J Stephenson, JAMA Dec 15, 1999, vol 282:2197-2198
  • Genetic Testing Research Library, Search for whitepapers, bibliography, articles and documents, National Association of Insurance Commissioners (NAIC)
  • Genetic Testing and Genetic Screening, Scope Notes, National Reference Center for Bioethics Literature, Joseph and Rose Kennedy Institute of Ethics, Georgetown University, Washington, DC. Updated February 2002
  • Genetic Testing Policies, Informed Consent, Confidentiality, Voluntary Participation, Institute of Medicine, 1993, review
  • Genetic Testing Opens Brave New World, Annals Internal Med, Jun 15, 1997. JWaalen
  • Institute of Medicine report Assessing Genetic Risks: Implications for Health and Social Policy, National Academy Press, $44.95. (800) 624-6242
  • If Genetic Tests Were Available for Diseases Which Could be Treated or Prevented, Many People Would Pay to Have Them, H Taylor, The Harris Poll® #26, June 5, 2002 finds that a large number of people would be interested in paying for genetic tests with their own money, if there were effective treatments, or ways of greatly reducing the risk, for the relevant diseases.
  • Promoting Safe and Effective Genetic Testing in the United States, Task Force on Genetic Testing, Department of Health and Human Services, National Institutes of Health, NIH-DOE ELSI Working Group , 1997, validation, quality, counseling, oversite
  • Wake up to the genetic revolution. Genetic Testing: The Concerns, Reuterlinkextra, Spring 1998
  • Your Genes, Your Choices: Exploring the Issues Raised by Genetic Research, American Association for the Advancement of Science, 1999 (information on albinism needs revisions)

    • Conditions:

    Health Insurance Portability and Accountability Act of 1996 (Pub. L. 104-191)

    Americans with Disabilities Act

    Birth Defects Prevention Act

    Courses

    Ethics Centers

    Technology evaluation

    International

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    Older sites, not longer available

  • Human Genome Project: Exploring the Scientific & Humanistic Dimensions (Massachusetts Corporation for Educational Telecommunications) (MCET)
  • The Genome Action Coalition (TGAC), [formerly at www.tgac.org/] policy and legislative issues, patient advocacy associations, professional genetic groups, pharmaceutical research / biotechnology companies, and universities involved in genetic legislative issues, i.e. nondiscrimination in health insurance and employment, medical record privacy, appropriations for National Institutes of Health, Human Genome Project, other members
  • Genetic Testing - A Question of Genes, PBS program 9/16/97, retired site, educator guide available online
  • Molecular Genetic Testing in Mainstream Medicine, Genetic Drift Newsletter, Vol. 14, Spring 1997, Mountain States Regional Genetic Services Network formerly posted at www.ahsc.arizona.edu/~msrgsn/gd/gdvol14a.htm
  • Huntington Disease DNA testing protocol, and ethical, legal and social issues - search for archive at HD Society
  • Presymptomatic Genetic Testing for Heritable Breast Cancer Risk, The National Breast Cancer Coalition, September, 1995 - search for archive at the National Cancer Institute
  • State legislation related to breast cancer 1980-1994. Wyatt et al., J. Public Health Managements Practive 2(2), 64-69
  • Remarks by the President, Bill Clinton, at White House at Genetic Screening Event, July 14, 1997, search archives

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