National Institutes of Health to create a genetic test database

Hoping to improve healthcare research and centralize data, the National Institutes of Health plans to create an online database of available genetic tests. In a notice published last week in the Federal Register, the organization seeks public comment on a plan first announced back in March 2010. The database also would include the scientific basis for those tests.

In its original announcement, NIH said that 1,600 genetic tests were available. Today, that number has grown to more than 2,000 tests.

Consumers, clinicians and research doctors all will be able to search the database. Physicians, in particular, already have started ordering genetic tests for several reasons, including:

  • To find possible genetic diseases in unborn babies;
  • To determine if a person carrying a gene for a disease might pass it on to their children;
  • To screen embryos for disease;
  • To test for genetic diseases in adults before they cause symptoms;
  • To confirm a diagnosis in a person who has disease symptoms.

NIH is asking researchers and manufacturers that submit data to update their information on an annual basis. Researchers from other nations also are welcome to submit data, according to the NIH.

To learn more:
- read the Health Data Management article
- see the notice in the Federal Register (.pdf)
- see the original NIH announcement from March 2010

Suggested Articles

Payers and providers have made significant investments in digitizing the healthcare system but have yet to see a return on that investment.

Fewer than 4 in 10 health systems can successfully share data with other health systems, which presents a number of challenges.

As telehealth programs continue to expand, it’s crucial to understand how facility management will shift with these advancements in healthcare.