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Published on: April 12, 2021

Beyond the test: patient-reported concerns and worries regarding kidney conditions and APOL1 genetic testing among

Rengin Elsurer Afsar1,2, Bryan Clair3, Aliza Anwar Memon1,2

  • 1SSM Health Saint Louis University Hospital, St. Louis, MO, United States.

Frontiers in Nephrology
|August 6, 2026
PubMed

Insights

Apolipoprotein L1 (APOL1) genetic testing concerns are common in Black Americans but decrease over time. Higher APOL1 risk genotypes were linked to increased kidney concern, yet overall worry about genetic risk declined.

Area of Science:

  • Nephrology
  • Genetics
  • Public Health

Background:

  • Apolipoprotein L1 (APOL1) renal risk variants (RRVs) are associated with increased kidney disease risk in Black Americans.
  • Patient concerns about genetic testing implications can limit its use.

Purpose of the Study:

  • To assess patient-reported concerns regarding kidney conditions and APOL1 high-risk genotypes.
  • To analyze changes in these concerns over a 3-month period.
  • To explore the relationship between APOL1 genotype and changes in kidney concern.

Main Methods:

  • Prospective enrollment of Black adults for APOL1 genotyping and surveys.
  • Analysis of patient-reported concerns at baseline and 3-month follow-up.
  • Correlation of APOL1 high-risk genotypes with kidney concern levels and changes.

Main Results:

  • 17.5% of 200 participants had an APOL1 high-risk genotype.
  • Kidney concern was common at baseline (73% extremely or very concerned).
  • Concerns remained stable or decreased for most participants (45% stable, 36% decreased).
  • APOL1 high-risk genotypes were more prevalent in those with increased kidney concern (29% vs 11%).
  • Worry about APOL1 high-risk genotype decreased from 14% to 8% over 3 months.

Conclusions:

  • Patient concerns about kidney conditions are prevalent but generally stable, with some subgroups showing higher levels.
  • While APOL1 high-risk genotypes were associated with increased kidney concern, overall worry about genetic risk diminished.
  • Findings can inform patient education and counseling for APOL1 testing.
Abstract

Keywords:
African Americansapolipoprotein L1chronic kidney diseasegenetic testingpatient concernsrisk factors

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