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For Patients and Families

List of resources to help you find accurate and reliable information on genetic and rare diseases.

… Finding accurate and reliable information on genetic and rare diseases among the millions … users quickly discover, an enormous amount of health information is available online. The material provided is for … or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that …

The Informed Consent Resource

Required Elements of the Consent Form

Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.

… asking for your permission to collect samples and health information from you for a research study on [specific … asking for your permission to collect samples and health information to be stored in a research biobank and used for … your participation in a study involving samples and health information you provided for [insert name of previous project …

The Informed Consent Resource

Special Considerations for Genomics Research

Explore genomics-relevant considerations for informed consent and guidance on how to approach them.

… research uses for which samples, genomic data, and health information might be shared. Investigators should ensure that … and broad sharing of genomic and phenotypic data. For more information on genomic data sharing expectations, see the … of previously collected samples, research data, and health information, investigators should consult with their IRBs to …

Policy Issues

Informed Consent

Informed consent shows respect for personal autonomy and is an important ethical requirement in research.

… their contributions, such as samples and health-related information, are critical for the success of most human … for genomics research, researchers should consider the information participants may need to understand risks and … human specimens or cell lines. … Vast amounts of personal information about participants are generated through studies …

For Patients and Families

Genetic and Rare Diseases Information Center

The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases.

… The Genetic and Rare Diseases Information Center helps people find useful information about genetic and rare diseases … The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by the …

Policy Issues

How Does Genome Editing Work?

Scientists have edited genomes for many years, but CRISPR technology has improved the speed, cost, accuracy, and efficiency of genome editing

… of genome editing in humans, the main application of this technology has been in basic research. Editing the genomes of … and ability to edit genomes for many years, but CRISPR technology has brought major improvements to the speed, cost, … recombination is the exchange (recombination) of genetic information between two similar (homologous) strands of DNA. …

News Release

New report offers a primer for doctors' use of clinical genome and exome sequencing

A new genome-based technology for demystifying undiagnosed illnesses - even rare childhood diseases - is moving into general medical practice.

… … Sooner than almost anyone expected, a new, genome-based technology for demystifying undiagnosed illnesses - … and career development at sites nationwide. Additional information about NHGRI can be found at www.genome.gov . … and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov . … …

Health

Genomics and Medicine

Genomic medicine involves using genomic information as part of clinical care and the health outcomes and policy implications of that clinical use.

… an emerging medical discipline that involves using genomic information about an individual as part of their clinical … to conduct and then analyze, and because disseminating information and educating healthcare workers about a new … Testing, Newborn Screening, Privacy In Genomics, Genomic Technology … Genomic medicine involves using genomic …

For Patients and Families

Financial Aid for Medical Treatment

A list of resources and information on financial aid for medical treatment.

… are some resources, however, that may help in finding information on financial aid for medical treatment. … Visit these websites frequently for new information as it becomes available. Talk to your state or … or social workers at your local hospital for more information on available resources. The materials provided …

Policy Issues

Privacy in Genomics

There are laws and policies that serve to protect the privacy of individuals' genomic information.

… privacy should be respected when their genomic information is used for research, clinical applications or … genetic and genomic privacy in these domains, along with information on the specific laws and policies that protect the privacy of genetic and genomic information. In the United States, the applicable privacy …