Who Should Be Screened?

Screening is only recommended for people who have an increased chance of having the disease, such as those with other family members who have hereditary hemochromatosis. The test may be ordered if you have a close family member—parent, brother, sister, or child—with the condition. It is best to get tested when you are age 18 to 30 when tests can usually detect the disease before serious organ damage occurs.

Genetic counseling to help you understand the meaning and possible results of the test is recommended before having genetic testing.

The U.S. Preventive Services Task Force (USPSTF) does not recommend genetic screening for hemochromatosis in the general population.¹ Screening is not recommended for the general population because hemochromatosis is not common. The general population includes people who do not have symptoms of hemochromatosis and who do not have a parent, brother, sister, or child with the disease.

Anyone can have the test, but a doctor must order it. You may decide to have HFE testing if other people in your family have hereditary hemochromatosis and:

• You want to see if you have the gene mutation too.
• You want to see how likely it will be that you will pass the disease on to your children.

Is Screening Accurate?

HFE screening accurately locates the gene that causes hereditary hemochromatosis about 85% of the time.² You may have HFE mutations and not have the disease, or you may have symptoms of the disease but gene testing does not find any mutations.