Genetics, Family History, and Kidney Disease
Your genes are the instructions inside your cells that tell your body how to grow and work. You inherit your genes from your parents. Genes influence traits like hair or eye color. They can also affect your risk for certain health problems, including kidney disease.
Sometimes, there are changes in genes (also called variants) that may raise the risk of kidney disease or cause specific inherited kidney conditions. Knowing your genetics and family history can help you and your doctor make a plan to protect your kidney health.
How genetics affect your kidney health
Family history and kidney disease
Having a family history of kidney disease means that one or more of your relatives has or had kidney disease. This does not always mean you will develop kidney disease, but your chances are higher than someone with no family history.
Family history can include:
- Parents, brothers, or sisters (close relatives) with kidney disease
- Aunts, uncles, grandparents, or cousins (extended relatives) with kidney disease
- Several family members who developed kidney disease at a young age
Knowing your family history helps your health care team understand your risk. If kidney disease runs in your family, your doctor may:
- Check your kidney function more often with blood and urine tests
- Watch for early signs of high blood pressure, diabetes, or other conditions that affect the kidneys
- Talk with you about healthy habits that may lower your risk
Example: If your mother and brother both have kidney disease, your doctor may recommend that you get your kidneys checked regularly, even if you feel healthy. Finding problems early means treatment can work best.
Sharing this information can also help your relatives. If your doctor suspects your kidney disease is inherited, family members may want to be tested or talk with their own doctors.
Inherited kidney diseases
Some kidney diseases are passed down in families through changes in specific genes. These are called inherited kidney diseases. Unlike simply having a family history, inherited conditions are directly caused by a gene change. If you inherit the change, you may develop the disease.
Inherited kidney diseases can start at different ages. Some appear in childhood, while others may not cause problems until adulthood. Even within the same family, one person may have mild symptoms while another may have more serious problems.
Some examples of inherited kidney disease include:
- Polycystic kidney disease (PKD): fluid-filled cysts grow in the kidneys and can cause kidney failure over time.
- Alport syndrome: affects the kidneys, ears, and eyes.
- Fabry disease: affects how the body breaks down fat and can damage the kidneys, heart, and nervous system.
- Primary hyperoxaluria type 1 (PH1): causes the body to make too much oxalate, leading to kidney stones and kidney damage.
- Primary distal renal tubular acidosis (dRTA): prevents the kidneys from balancing acid in the blood.
- APOL1 gene-related kidney disease: certain changes in the APOL1 gene can raise the risk of kidney disease, especially in people of African ancestry.
What this means for you and your family
Inherited kidney diseases don’t always look the same in every person. Even within the same family, one person may have mild symptoms while another may have more serious problems. Knowing about these conditions can help you:
- Catch kidney problems early
- Work with your doctor on the best treatment plan
- Help family members learn if they should be tested
Genetic testing and counseling
Genetic testing looks at your DNA to find changes in your genes. Testing is usually done with a blood or saliva sample. Results can:
- Confirm if you have an inherited kidney disease (for example, PKD or Alport syndrome)
- Explain why kidney disease runs in your family
- Show whether you and your relatives are more likely to develop kidney disease
- Guide your care and treatment plan
Your doctor may suggest testing if:
- You were diagnosed with kidney disease at a young age
- Several family members have kidney disease
- You have signs of an inherited condition such as PKD or Alport syndrome
A genetic counselor is a health professional who can:
- Review your family health history
- Explain the benefits and limits of testing
- Help you decide if testing is right for you
- Support you in understanding what results mean for you and your family
Genetic counseling can be especially helpful if you are thinking about family planning, organ donation, or sharing health information with relatives.
Emotional impacts of testing
Learning about your genes can bring up many feelings. Some people feel relief to finally have answers. Others may feel anxious about their future health or concerned for their children. These feelings are normal.
Your care team, including genetic counselors, social workers, and support groups, can help you process this information and cope with any stress it brings. Talking openly with your family and health care team can make it easier to understand and manage what testing means for you.
Your doctor may suggest genetic testing if:
- You were diagnosed with kidney disease at a young age.
- Several family members have kidney disease.
- You have signs of an inherited condition such as PKD or Alport syndrome.
A genetic counselor can help you understand your family health history, explain testing, and review what result mean for you and your relatives.
How testing can help you and your family
Learning about your genes and family history can give you and your doctor valuable information. It can explain why kidney disease runs in your family, point to the best treatments for your condition, and help you take steps to protect your health and the health of your loved ones. Even if you don’t have kidney disease now, knowing your risk can guide important choices for the future.
- Get the right care sooner. Some treatments are available only for certain inherited kidney diseases.
- Protect your family. Relatives may also want testing if an inherited condition is found.
- Plan for the future. Results may guide decisions about family planning, transplant options, or living donation.
- Stay engaged in your health. Knowing your risks can motivate healthy lifestyle choices and regular check-ups.
How testing helps your family
Sharing your results may:
- Alert relatives to their own risk
- Encourage family members to get tested or monitored
- Give your children information they may need for their future health
- Help relatives make informed decisions about organ donation or family planning
Next steps if you have an inherited condition
Finding out you have an inherited kidney disease can feel overwhelming, but you are not alone. Knowing the cause of your condition gives you and your health care team a chance to take action. With the right care, lifestyle changes, and support, you can protect your kidney health and plan for the future.
Your action plan:
- Work with your doctor. Your doctor will monitor your kidney function and may recommend treatments to slow disease progression.
- See a kidney dietitian. Nutrition guidance can help manage symptoms and protect your kidneys.
- Ask about support. Social workers, counselors, or patient support groups can help you and your family cope with the emotional side of living with a genetic condition.
- Share results with family. This information may help them get tested and take steps to protect their health.
Working closely with your care team can help you stay healthier for longer and give your family important guidance, too.
Having an inherited kidney condition does not always mean kidney failure is certain. With the right care, many people live full and active lives.
Preparing for your appointment
Bring these items to your next visit:
- A list of relatives who have or had kidney disease and their ages at diagnosis
- Any medical records or genetic test results you already have
- Questions you want to ask (see below)
- A trusted family member or friend for support and note-taking
Questions to ask your doctor or genetic counselor
It can feel overwhelming to talk about genetics and kidney disease. Preparing a few questions ahead of time can help you get the information you need and make the most of your appointment. Use this list as a starting point and add any other questions that matter to you and your family.
- Does kidney disease run in my family?
- Should I get genetic testing?
- What will the results tell me about my risk or my children’s risk?
- How will genetic testing change my care plan?
- Are there treatments or lifestyle changes that can help if I have an inherited kidney disease?
- Should other family members be tested?
- Where can I find support if I have a genetic condition?