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The Informed Consent Resource

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 …

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. …

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 …

Policy Issues

What is genome editing?

Genome editing is a method that lets scientists change the DNA of many organisms, including plants, bacteria, and animals.

… to treat Layla, and instead used another genome editing technology called TALENs. Doctors tried many treatments … technologies are critical steps to ensure that this technology is ready for use in patients. Ethical concerns … and animals. … CRISPR, CRISPR-Cas9, Genome Editing Technology, Genome Editing, Genomic Technology, Gene Editing, …

Policies and Guidance

Data Sharing Policies and Expectations

A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.

… the relevant template below or send the basic study information needed for study registration to the NHGRI GPA ( nhgrigpa@mail.nih.gov ): NHGRI’s Basic Study Information Template Template for Requesting an … data sharing policies. For general NIH data sharing policy information, please visit NIH's Scientific Data Sharing …

Policy Issues

Genetic Discrimination

In 2008, the Genetic Information Nondiscrimination Act was passed into law, prohibiting discrimination by employers and health insurers.

… and cures. This page provides an overview of the Genetic Information Nondiscrimination Act (GINA) and describes what … protections GINA does and does not offer. … The Genetic Information Nondiscrimination Act (GINA) of 2008 protects … Americans from discrimination based on their genetic information in both health insurance (Title I) and employment …

Policy Issues

Investigative Genomics

Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.

… compatible with limited or older samples. Today, genetic information is used by law enforcement to investigate … criminal acts. The legal system also uses genetic information to exonerate those who have been convicted of … crime scenes, in order to identify criminal suspects. The technology's analysis is limited to 13-20 designated DNA …

Policy Issues

Return of Research Results

Clinical research may yield new health-related information about volunteers who have chosen to participate in the studies.

… studies, scientists may discover new health-related information about volunteers who have chosen to participate … human genome, there remains much to be discovered. Genomic information is interpreted differently over time as more is … Results … Clinical research may yield new health-related information about volunteers who have chosen to participate …