How Genetic Testing Could Change the Future of Kidney Care

We inherit genes, which are like instruction manuals that tell the body how to develop and function, from our parents.

Sometimes, changes in these genes, called genetic variants, cause kidney disease or increase a person's risk of developing it.

But not every genetic variant causes disease. The effects depend on the specific gene and genetic change, as well as other factors.

This is where genetic testing can help. By looking for specific changes in a person's DNA, genetic testing may help explain why kidney disease developed, confirm a suspected diagnosis, or identify an inherited risk.

Having this information may help healthcare professionals make decisions about treatment and monitoring. It can also help people better understand their condition and determine whether genetic testing might be useful for relatives.

Learn more about genetics and kidney disease.

Genetic testing is becoming more widely available, but bringing it into everyday kidney care takes more than advances in science. Healthcare professionals need to know who would benefit from testing, how to explain the results, and how to help people decide what to do with that information.

Those challenges were central to NKF's Genetics in Kidney Health Summit.

Sessions explored:

• Genetic testing in kidney care: When testing may be appropriate and how healthcare teams can incorporate it into routine care.
• Testing for relatives: How genetic information may help families understand inherited risks and whether relatives could benefit from testing.
• Equity and access: How to make genetic testing and genetic services more accessible across racial, cultural, geographic, and economic differences.
• Privacy and insurance: Questions about how genetic information is used and what concerns people may have about sharing their results.
• Understanding test results and follow-up care: How healthcare professionals can explain genetic findings, including results that do not provide a clear answer, and how to connect people with genetic counselors, specialists, and other members of their healthcare team.

“Genetic testing is becoming an increasingly important part of kidney care because it can replace uncertainty with answers and give clinicians and families clearer information for decisions,” said Meyeon Park, Professor of Clinical Medicine at the University of California San Francisco and co-chair of the summit. “This gathering was designed to help move genetics into real-world practice, with patients and families guiding how that work is done.”

By bringing these groups together, NKF aimed to help bridge the gap between advances in kidney genetics and the practical steps needed to make genetic testing a useful part of everyday care.

Read more about NKF's Genetics in Kidney Health Summit.

Patient speakers at the summit also shared how inherited kidney disease can affect families across generations.

Katie Reed, a kidney transplant recipient, described this experience as “multi-generational trauma.”

Her words highlighted that genetic testing is more than just identifying a genetic change. Learning that a condition may run in a family raises difficult questions about relatives, future health, and what the diagnosis means for the next generation.

These conversations are complicated and deeply personal. That's why summit participants emphasized the importance of centering people, not just the test results.

Learn more about the difference between genetics and family history.

Genetic testing is becoming more mainstream, but that doesn’t mean it is easily available for everyone.

At the summit, participants discussed the need to make genetic testing and genetic services available to people across different racial, cultural, geographic, and economic backgrounds.

This includes addressing barriers, like lack of insurance coverage, that may make it harder for some people to access genetic testing, counseling, or follow-up care.

The question of who can access a person’s genetic information and how it may be used was also raised as a major barrier to testing and will require clear guidelines for healthcare professionals. 

Watch the full Genetics in Kidney Health Showcase.

Not everyone with kidney disease needs genetic testing. Your healthcare team can review your medical and family history and help determine whether genetic testing may be appropriate.

Consider asking your healthcare team about genetic testing if:

• Several people in your family have kidney disease.
• Family members developed kidney disease at a young age.
• The cause of your kidney disease is unknown.
• A relative was diagnosed with an inherited kidney disease.

A genetic counselor may also be able to explain the benefits and limitations of testing and help you understand your options.

The future of kidney genetics holds the promise of more advancements and improved diagnosis. Advancements in kidney genetics research may also lead to new therapies.

However, the future of kidney genetics depends on more than scientific advances. It also requires making sure people and families have the information, guidance, and support they need to make informed decisions about their care and to advocate for better kidney care. 

Through professional education, collaboration, and a commitment to including the voices of people living with kidney disease, NKF is helping turn discoveries into practical advances that can improve kidney care and open doors to future treatments.