Library Guides: Consumer Health: A Guide: Genetics

Genetics Grand Round Presentation

Health Literacy and Genetics Education
December 6, 2019

Louisiana and Tulane Resources in Genetics

Hayward Genetics Center The Hayward Genetics Center at Tulane University Health Sciences Center is an interdepartmental multidisciplinary program providing state-of-the-art service, education, and research in the full spectrum of diagnosis, counseling and management of genetic disorders.
Genetics and Louisiana Families
Genetics and Louisiana Families is a collection of educational information about genetics, especially those genetic issues that are important to the people of Louisiana. Genetics and Louisiana Families is written and designed to be useful to the families of individuals affected by genetic disease, as well as to their healthcare providers.

Family Health History

The family health history can be a tool that empowers patients and the public in understanding health risks in relation to their genetic heritage.

Family Health History A good place to begin for both healthcare professionals and for the general public who wants to know more.
NHGRI Family Health History One of the NHGRI webpages on the topic of family health history.
Genetic Alliance- Does it Run in the Family? A Guide to Family Health History Genetic Services Branch of the Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA).
Acting On Your Family Health History Centers for Disease Control

Finding Information about Genetics & Genetic Testing

CDC - National Office of Public Health Genomics Easy-to-understand information about the exciting and emerging field of genomics
Genome.gov / The National Human Genome Research Institute See section on legal issues, privacy and other similar topics regarding societal impact. The information here is for healthcare professionals, researchers as well as the general public.
NIH - Genetic and Rare Diseases Information Center (GARD) Search or browse for rare or genetic diseases. Genetic and Rare Diseases Information Center employs experienced information specialists to answer in English or Spanish questions from the general public. Toll free (888) 205-2311. From the Office of Rare Diseases Research
Choosing Wisely: Making Smart Decisions about Genetic Testing (ACMG) American College of Medical Genetics and Genomics has provided information to the Choosing Wisely campaign to help inform both the public and providers about discussing genetic testing. This information is available in Spanish as well.
more...less...
Consumer Reports. Developed in cooperation with the American College of Medical Genetics and Genomics for Choosing Wisely, a project of the ABIM Foundation. To learn more about the sources used in this report and terms and conditions of use, please visit - https://choosingwisely.org/patient-resources
ACMG's recommendations through Choosing Wisely Bethesda, MD -- July 10, 2015 - The American College of Medical Genetics and Genomics (ACMG) . PDF document
Choosing Wisely - Genetics Choosing Wisely® is an initiative of the ABIM Foundation in partnership with Consumer Reports
American College of Medical Genetics and Genomics 2016 Position Statement Regarding Direct-to-Consumer Genetic Testing (PDF) Genetics in Medicine: Volume 18 (2):207-8 - February 2016
All of Us Research Program - part of the Precision Medicine Initiative NIH is leading the effort to build a national, large-scale research enterprise with one million or more volunteers to extend precision medicine to all diseases.

Ethics and Privacy

Genetic Information Nondiscrimination Act (GINA) Genetic Alliance, the Genetics and Public Policy Center at the Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics through funding by The Pew Charitable Trusts. May 2010.
Genetic Alliance Genetic Alliance engages individuals, families and communities to transform health.
Center for Genetics and Society A nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies. We work with a growing network of scientists, health professionals, civil society leaders, and others.
Legislative Tracker: Louisiana Law: ACT 563 – HB 1019: Prohibits abortion based on genetic abnormality (Effective date: 06/17/2016-Delayed enforcement) An introduction to the Genetic Information Nondiscrimination Act (Effective date: 06/17/2016 - The state has agreed to delay enforcement.***)
Caplan AL (2015) Chloe’s Law: A Powerful Legislative Movement Challenging a Core Ethical Norm of Genetic Testing. PLoS Biol 13(8): e1002219. The ethical norm governing genetic counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality since the early 1970s: doctors and counselors were obligated to simply provide people with information to help them make decisions without actually guiding them toward a particular decision. What patients do with test results in terms of deciding whether to have a child or to continue a pregnancy after a diagnosis of Down syndrome, counselors were taught, is strictly up to them.
All of Us Research Program (NIH) -- historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.

Guide for Genetic Consultation by Birgit Zirn; Karl Mehnert
ISBN: 9783030043445
Publication Date: 2019-05-08
SpringerLink (Medicine 2019)

Genetic associations and support groups

Genetic Counseling, Support and Advocacy Groups Online - genome.gov NIH
Genetic and Rare Diseases Information Center (GARD) - NIH rarediseases.info.nih.gov
NIH Precision Medicine Initiative® Cohort Program National Institute on Minority Health and Health Disparities (NIMHD)
Genetic Alliance Genetic Alliance is a 501 (c)(3) not-for-profit organization. Genetic Alliance’s work is supported by a blend of funding from government grants and contracts, industry and corporate support, individual donations, and fees generated by services and events.
The Association for X and Y Chromosome Variations (AXYS) The needs of those affected by one or more extra X and/or Y chromosomes.
Support and Advocacy groups - National Newborn Screening and Global Resource Center Support groups and disorder fact sheets for newborn screening. . National Newborn Screening and Global Resource Center. Austin, TX