| Basic genetic information | - Genetic variants in the APOL1 gene, called G1 and G2, entered the genome of individuals of African descent many centuries ago or longer. These variants protected African ancestors from a disease called trypanosomiasis (sleeping sickness).
- When an individual has one APOL1 variant (from one parent) they have one copy of a risk allele, protected from sleeping sickness, and they will not get kidney failure.
- When an individual has two APOL1 risk variants (one from each parent), they are at increased risk of developing:
- High blood pressure. They should have their blood pressure checked several times per year (monthly is reasonable).
- Kidney failure (lifetime risk of 15 to 30%). They should have kidney function tested at least once a year (blood and urine test).
- HIV-associated kidney disease (if they also have HIV infection).
- Even if an individual has normal kidney function, kidney function should be monitored over time.
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| Information for relatives | - An individual with two APOL1 variants will pass one of the risk variants to their child.
- If the child's other parent has African American ancestry, there is a 13% chance that that individual will also carry an APOL1 variant and a 50% chance it will be passed to the child.
- Parents and siblings of an individual with an APOL1 risk variant may also carry the variant and may wish to be tested.
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| Protections from discrimination based on genetic information | - Individuals who are disabled by a genetic disorder are protected from discrimination by the Americans with Disabilities Act (ADA).
- Legal protection against the use of genetic information by group health insurance plans and employers is available at the federal level through the Genetic Information Nondiscrimination Act (GINA).
- GINA does not apply to long-term care insurance, life insurance, or certain employers (those with <15 employees, the United States military health system, the Indian Health Service, the Veterans Health Administration, or the Federal Employees Health Benefits Program). For people who do not have kidney disease, genetic testing results may affect the ability to get long-term care insurance and life insurance.
- The United States Affordable Care Act (ACA) prohibits variations in health insurance premiums based on health status and genetic information.
- Outside the United States, legislation and policies regarding the use of genetic information in insurance and employment varies considerably by country.
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| Kidney donation | - Kidney transplants from donors with a high-risk APOL1 haplotype have a higher risk of failure, and it is recommended that individuals known to have a high-risk genotype do not donate a kidney.
- Black individuals may wish to be tested for the high-risk APOL1 haplotype prior to donation because they are at increased risk of kidney disease in the future and their donated kidney may not work as well as a kidney from a donor without the high-risk haplotype.
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| Thinking about the future | - Stay in touch with your doctor.
- Read about APOL1 online or in the news.
- Know that research is underway.
- Several treatments will be tested soon in clinical trials.
- Many new developments are coming.
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