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About Genomics

NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues

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

… Techniques to modify DNA in the genome have existed for several decades, but the conversation about the science and ethics of genome editing has grown louder due to faster, cheaper, and … the popular media tends to focus on the potential use of genome editing in humans, the main application of this …

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.

… Genome editing is a method that lets scientists change the … risk. Scientists use different technologies to do this. … Genome editing technologies enable scientists to make changes … add, or replace the DNA where it was cut. The first genome editing technologies were developed in the late 1900s. …

Policy Issues

Genome Statute and Legislation Database OLD

The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during U.S. state legislative sessions.

… The Genome Statute and Legislation Database is comprised of state … database, together with a description of each topic. The Genome Statute and Legislation Database is reviewed and … for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include …

Policy Issues

How is Genome Editing Used?

Genome editing is currently being applied to research on cancer, mental health, rare diseases, and many other disease areas.

… Genome editing is currently being applied to research on … organisms such as mice or zebrafish. Researchers rely on genome editing tools as a way to explore the connection … help researchers determine if specific changes made to the genome contribute to the disease. It can also lead to the …

Policy Issues

What are the Ethical Concerns of Genome Editing?

Most ethical discussions about genome editing center on human germline editing because changes are passed down to future generations.

… Most of the ethical discussions related to genome editing center around human germline because editing … be passed down to future generations. … The debate about genome editing is not a new one but has regained attention … Bioethicists and researchers generally believe that human genome editing for reproductive purposes should not be …

Policy Issues

What do People Think About Genome Editing?

Patients with genetic disorders and members of the public have diverse about germline genome editing.

… the world, have diverse views about whether germline genome editing should be used to prevent or treat genetic … genetic disorders have diverse views on whether germline genome editing should be used to prevent or treat genetic … condition to be a disability. They worry that if human genome editing becomes widespread, persons born with genetic …

Policy Issues

Privacy in Genomics

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

… for genetic information, which can be explored in the Genome Statute and Legislation Database . The Common Rule … and Informatics Lab-Space (AnVIL), and The Cancer Genome Atlas (TCGA). To access sensitive data from one of … could be identified from the requested information. … Genome Statue and Legislative Database Privacy Protections …

Policy Issues

Participating in Genomics Research

Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.

… is an opportunity to support scientific exploration of the genome and to help NIH in its mission to understand, prevent, … discriminated against as a result of information about my genome being revealed? In addition to taking steps to protect … research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and …

Explainer

Use of Population Descriptors in Genomics

Appropriate use of population descriptors in research is a critical scientific issue that is important for advancing genomic science and improving healthcare across human populations.

… to look at the frequency of DNA variants across the genome. The definitions, measurement, uses and … National Human Genome Research Institute. Workshop on the Use of Race and …