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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

… NHGRI is committed to driving the responsible use of genomics in society in order to advance knowledge and ensure that genomics benefits the health of all humans. To do this, we consider the ethical, legal, and social aspect of genomics research in our work, including these key issues. … …

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.

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

… creating targeted mutations to the genome. 5 Large-scale genomics projects that once took many years and tens of …

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.

… sessions. … NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have … Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605 ; … introduced during U.S. state legislative sessions. … Genomics Legislation, Human Genome Project, Genetic …

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.

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.

… the approaches, objectives and global society. Brief Funct Genomics, 16(1), 46-56. doi:10.1093/bfgp/elv053 [8] Park, A. …

Policy Issues

What do People Think About Genome Editing?

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

Policy Issues

Privacy in Genomics

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

… debate whether we need further measures. … When conducting genomics research, two essential values of scientific … a DNA sample can never be truly anonymized. To advance genomics research, NIH houses several databases where … are de-identified. … Because of remarkable advancements in genomics research in recent years, the use of genomic testing …

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.

… Participating in genomics research is an opportunity to support scientific … consideration that is especially important to consider for genomics research since genomic information is hereditary and … and family relationships. Is it safe to participate in genomics research? Research participants are protected by a …

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.

… and to advance the use of population descriptors in genomics and biomedical research. The National Academies of … in a review of the use of population descriptors in genomics research. The NASEM Report includes 13 … A growing collection of SDOH measures are available in a toolkit for researchers. 18 In all types of research, when …