The Patient, the Provider, and the TikTok Creator: Qualitative Analysis of the Content and Quality of Videos on Prenatal Genetic Screening

Abstract

Introduction

Although providers may view the use of the noninvasive prenatal testing (NIPT) screen as an opportunity for patients to learn more about potential chromosomal variants of a fetus, research suggests that patients may view the genetic screening test primarily as an opportunity to learn about their fetus's sex chromosomes and may not understand the implications of a screening test, as compared with a diagnostic test. This study critically evaluates the informational quality of TikTok content related to NIPT, with a specific focus on the use and conflation of sex and gender terminology.

Methods

A total of 83 TikTok videos met our inclusion criteria. Two team members systematically coded the videos using a modified DISCERN instrument and content-specific codes to assess reliability and informational quality across 3 content creator categories: patients/nonexperts, health care professionals, and organizations. Many codes focused specifically on the use of gendered language in the videos.

Results

Patient-generated content exhibited the highest engagement metrics but frequently misrepresented NIPT as a confirmatory test and conflated sex with gender. Health care provider and organizational videos demonstrated higher informational reliability but were not immune to deterministic language around sex and gender and promotional framing.

Discussion

The findings underscore the influence of social media as a health information source and reveal significant gaps in public understanding of NIPT, particularly regarding its screening nature and limitations. Additionally, these results highlight the need for clinical protocols that address patient misconceptions and suggest that health care professionals should actively engage with digital platforms to familiarize themselves with what patients are seeing and hearing online. Recommendations include avoiding gendered mirroring, asking questions about patient knowledge, and leveraging social media for public health education.