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Policy Issues in Genomics

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.

Coverage and Reimbursement of Genetic Tests | NHGRI
Coverage and Reimbursement of Genetic Tests

Payers such as insurance companies and Medicare need systematic ways of evaluating genetic tests for reimbursement.

​Genetic Discrimination | NHGRI
Genetic Discrimination

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

Genome Editing | NHGRI
What is genome editing?

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

Health Disparities | NHGRI
Health Disparities

NHGRI wants to ensure that all populations benefit from the advances of genomics research.

​Human Subjects Research | NHGRI
Human Subjects Research

Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.

Informed Consent
Informed Consent

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

​Intellectual Property in Genomics | NHGRI
Intellectual Property in Genomics

In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.

DNA with magnifying glass
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.

graphic showing people as part of a spectrum
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.

​Privacy in Genomics | NHGRI
Privacy in Genomics

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

​Regulation of Genetic Tests | NHGRI
Regulation of Genetic Tests

Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.

Synthetic Biology | NHGRI
Synthetic Biology

Synthetic biology is a field of science that involves redesigning organisms for useful purposes by engineering them to have new abilities.

Last updated: February 8, 2024