Public Opinions and Attitudes toward Noninvasive Prenatal Testing on Reddit: Content and Sentiment Analysis

A screening program involves systematically testing a specific population for certain health conditions, with the aim of identifying individuals at risk for further diagnostic evaluation [1]. As such, noninvasive prenatal testing (NIPT) operates within the framework of a screening program [2]. NIPT is designed to identify pregnancies at risk for rare chromosomal abnormalities, including trisomy 13, 18, and 21, as well as sex chromosome aneuploidies [1]. As a test that precedes confirmatory diagnostic testing, NIPT is considered to be a first-tier screening tool [1]. Performed as early as 9–10 weeks of pregnancy up until the time of birth, NIPT is more accurate than other types of maternal serum screening, with high sensitivity and specificity [2], and a low false-positive rate (0.09–0.13%) [3]. While there is no risk of miscarriage associated with this test, an invasive diagnostic test will be offered to those who screen positive to confirm the NIPT results [1].

Following its introduction into clinical care in 2011, NIPT become widespread across the globe, but access and coverage policies vary by jurisdiction. In most countries, NIPT is offered to women identified as high risk for chromosome aneuploidies or other fetal anomalies based on prior serum screening, ultrasound abnormalities, or a relevant family history. While increasing numbers of payors provide coverage for NIPT for those considered to be at high risk and guidelines are shifting to endorse its use in the average risk population, cost remains a major barrier to access [4]. As a result, patients may choose to pay out-of-pocket for the test through commercial laboratories or simply not have access to this test. In addition to test accuracy and cost, the acceptability of a test from the perspective of the target population remains fundamental criteria of screening programs [5]. Gauging the acceptability of NIPT is particularly important as its use expands to the general population as a first-tier test [6] and as some jurisdictions and the commercial marketplace move to expand the list of screening targets to include a wider range of medical conditions [7].

To this end, a systematic review found that NIPT was generally viewed positively by pregnant women and clinicians, due to its noninvasive nature, high accuracy, and ability to provide earlier and more reliable results compared to other prenatal tests [1]. However, reasons not worthwhile were expressed surrounding the emotional impact of receiving uncertain or abnormal results, potential stigmatization of certain genetic conditions, the possibility of NIPT leading to unnecessary invasive testing or abortions, and inequities in access related to coverage policies [1].

In addition to primary data collection using traditional survey and interview techniques, social media platforms such as Twitter and Reddit have grown in importance as a data source for researchers, clinicians, educators, and policy stakeholders to track public opinion [8, 9]. Regarding to NIPT, researchers investigated NIPT discussions on Reddit by using content analysis and found that NIPT is regarded as valuable, but raises questions for the public [10]. In another study, researchers used a machine learning-based analysis to investigate patients’ reactions to noninvasive and invasive prenatal tests on Reddit [11]. They discovered that since the introduction of NIPT, the popularity of prenatal diagnosis has grown. While the two mentioned studies have examined public opinions regarding NIPT, they have not extensively explored public emotions related to NIPT. Understanding public emotions alongside public opinions can provide a more comprehensive understanding of societal perceptions, attitudes, surrounding NIPT and inform targeted counseling strategies for those who might benefit from greater emotional support throughout the NIPT journey.

Indeed, sentiment analysis is gaining recognition as a prominent method for assessing sentiments and opinions in text data [12‒14]. Specifically, this approach involves assigning numerical values to words within a text corpus to capture the expressed sentiment [12]. Sentiment analysis is widely used in natural language processing (NLP) to extract sentiment information and understand public opinions and emotions on social media [15, 16]. For example, researchers analyzed the online conversations and prevailing sentiments concerning dementia within the Chinese population, utilizing data extracted from Weibo. Their research unveiled that the sentiments expressed by Weibo users were predominantly negative when discussing dementia [15]. Similarly, by using sentiment analysis, researchers extracted both topics surrounding COVID-19 vaccination from Twitter. Their findings identified predominantly positive emotions in the public discourse regarding the COVID-19 vaccine, although a notable proportion, approximately one-third, exhibited negative emotions [16]. The application of sentiment analysis in the domain of NIPT has yet to be extensively explored.

Therefore, using NLP techniques (i.e., sentiment analysis) as a novel approach, the purpose of this study was to investigate public opinions, attitudes, and emotions toward NIPT on Reddit. Specifically, we explore topics discussed, reasons NIPT was perceived to be worthwhile or not worthwhile, and emotional responses to NIPT. Through analyzing public opinions, attitudes, and emotions toward NIPT on social media platforms, public health researchers and professionals can tap into a wide range of viewpoints and obtain valuable insights into the overall acceptability of this technology from the perspective of the target population. Moreover, actively monitoring public discussions and conversations about NIPT allows public health experts to stay informed about emerging trends, concerns, and misconceptions surrounding this technology. This timely awareness enables them to promptly address misinformation, respond effectively, and provide accurate information to the public.

Reddit is one of the most popular social media platforms with a large number of user groups (i.e., over 430 million active monthly users worldwide) [17]. It is comprised of separate communities known as subreddits that focus on specific topics of interest, are created, managed, and used by anonymous participants. Users can create posts and reply to posts with comments. A Reddit post is a piece of content that a user submits to a particular subreddit, and a Reedit comment is a response to a post or another comment. Reddit posts are created by users to start a discussion and tend to be longer and more detailed, whereas comments are a way for users to contribute to an existing discussion, typically focused on specific points made in the post or comment. When a user signs up to Reddit, no personal information is required. The anonymous nature of this platform fosters an environment in which users can discuss and interact with one another freely [18]. Reddit includes numerous posts related to NIPT; each is associated with one or more specific subreddits.

Aligned with emerging best practices, we selected a subset of subreddits from which the majority of posts regarding NIPT originate and for which there is a membership of at least 50,000 for the current study [18]. The data were obtained between September 2012 and September 2022. September 2012 marks the date of the initial post discovered, following the introduction of NIPT in 2011. These subreddits included r/Pregnant, r/BabyBumps, r/Beyongthebump, and r/Mommit (e.g., https://www.reddit.com/r/BabyBumps/). Using R program (“RedditExtractoR” package), we downloaded all available data from four subreddits related to NIPT. We used the following search terms to identify relevant content within Reddit’s “relevance” setting: “non-invasive prenatal testing,” “non-invasive prenatal test,” “NIPT,” and “genetic test.” Our search yielded a total of 594 initiating posts. After removal of duplicated posts and posts unrelated to NIPT, a total of 367 posts and 7,822 comments on these 367 posts remained. Inclusion criteria for the posts and comments were: (1) shared any personal/other experience with NIPT, (2) expressed feelings about NIPT, (3) shared personal opinions on NIPT (e.g., good/bad, worth it/not worth it, beneficial/problematic), and (4) responded to any NIPT-related question with personal experience, feelings, or opinions. Posts and comments were excluded if they: (1) only asked questions about NIPT, (2) were unrelated to NIPT, (3) were only related to insurance, and (4) were duplicated comments. In total, 1,986 comments were selected for further content and sentiment analysis. Because all data were available in the public domain, research ethics approval was not required.

For all of the posts (N = 367), we used content analysis to understand the public discourse on NIPT. The coding scheme developed by Marcon et al. [10] was used in the current study and included the following categories: (1) NIPT-related questions (e.g., clinical questions, costs, and accuracy), (2) reasons NIPT was perceived to be not worthwhile (e.g., coverage, anxiousness), (3) reasons NIPT was perceived to be worthwhile (e.g., value of information, peace of mind), and (4) other topics.

The following categories were included in the coding scheme for comments: (1) NIPT was perceived as worthwhile or beneficial (e.g., value of information, peace of mind), (2) NIPT was perceived as not worth doing (e.g., coverage, anxiousness), (3) shared their personal experience with NIPT without expressing an opinion on whether it was worthwhile, and (4) expressed pursuing NIPT was a personal choice.

Next, we used several lexical-based methods for sentiment analysis [19]. These methods employ lexicons of words with valence scores that have been manually assigned, which the algorithm uses as a reference for text analysis. All analyses were performed in R [20]. “tm” package was used to clean the text data (e.g., remove numbers, stop-words, punctuation). The “Syuzhet” package provides access to common sentiment lexicons, which is a predefined collection of words and phrases categorized based on their associated emotional tone, such as positive, negative, or neutral, used for sentiment analysis in NLP, including Bing [21], NRC [22], Syuzhet [23], and AFINN [24]. Negative and positive sentiments (i.e., words) from the Syuzhet (−1 to +1; 0.1 interval) and AFINN (−5 to +5; 1.0 interval) were classified continuously, whereas NRC and Bing lexicons were quantified binomially as −1 or +1, respectively, and the sum in each comment was calculated. Positive values represent positive emotions, while negative values represent negative emotions. As a result, higher scores indicate more positive emotions. The NRC lexicon allowed us to identify eight distinct emotions (e.g., anger, trust, sadness, anticipation, disgust, fear, joy, and surprise). Specifically, the word in the comment that was related to an emotion in this lexicon would be assigned a value (0 = the word is not associated with this emotion, 1 = the word is associated with this emotion) based on the NRC Emotion Lexicon [22]. One word could be assigned multiple distinct emotions, and each emotion was not inherently linked to positivity or negativity. For example, the word “risk” was given “anticipation = 1; fear = 1; negative = 1”; the word “peace” was given “anticipation = 1, joy = 1, trust = 1; positive = 1.” By adding the values, the total score of each emotion was calculated. Moreover, the sentiment scores were calculated by subtracting positive emotion from negative emotion; thus, positive sentiment scores indicate more positive emotion than negative emotions. In addition, we looked at each NRC emotion category separately for comments that were categorized as “NIPT is worth it” and for comments that were categorized as “NIPT is not worth it.” We also plotted the comments and their sentiment scores by year. “ggplot2” packages were used to generate plots and graphs.

In total, we collected 367 posts published by 337 unique Redditors between September 2012 and September 2022. The number of posts per year increased over time. These posts included 7,822 comments by 3,721 unique Redditors. Table 1 summarizes the characteristics of the Reddit posts in our data file.

To assess intercoder reliability, two coders (B.X. and J.Y.) independently coded 10% of the data. Absolute agreement between raters was 0.9 (range = 0.89–0.95). Discrepancies between coders were resolved by discussion until consensus was reached.

According to our findings, 86.4% (317/367) of the posts asked questions about NIPT, 56.9% (209/367) expressed reasons why NIPT was perceived to be not worthwhile, and 30.5% (112/367) expressed reasons it was perceived to be worthwhile. With respect to questions, 90 Redditors were most interested in knowing about the timing and mode of delivery of NIPT results (24.5%), followed by the cost and general value of NIPT (15.8%, 58/367 and 14.4%, 53/367, respectively). The most common reasons for which NIPT was perceived to be not worthwhile were related to coverage/insurance, anxiety, and doubts about the accuracy of NIPT. The most common reasons for which it was perceived to be worthwhile were related to the identification of fetal sex, the provision of valuable information, and peace of mind. Other topics discussed in the posts related to sharing personal experience with NIPT and sharing articles/information/news about NIPT (Table 2).

1,986 comments were identified for content and sentiment analysis based on our inclusion and exclusion criteria. Among the 1,986 comments, 1,271 Redditors (61.3%) thought that NIPT was worthwhile or beneficial. Similar to the posts, the most frequently mentioned reasons for which it was perceived to be worthwhile were related to providing peace of mind, valuable information, mental and logistical preparation, and identification of fetal sex (Tables 3, 4).

However, 394 (19.8%) of Redditors felt that NIPT was not worth doing. Unlike the reasons stated in the posts, the most common reason for which it was not worthwhile expressed by Redditors in the comments related to the perception of being at low risk. Specifically, many individuals conveyed that they didn’t see the value in undergoing NIPT due to the perception that they were carrying a low-risk pregnancy. Additionally, some focused on the prohibitive cost associated with undergoing NIPT, the potential for unwanted anxiety or stress, and the belief that NIPT results would not change anything about their pregnancy management (Tables 3, 4). The remaining 375 Redditors (18.9%) only shared their personal experience with NIPT without expressing an opinion about whether it was worthwhile. Finally, 42 (2.4%) of the comments stated that pursuing NIPT was a personal choice.

Table 5 displays the minimum, maximum, median, and mean sentiment scores for each technique. As illustrated in Figure 1, when discussing NIPT, the public generally conveyed a greater amount of positive emotion compared to negative emotion.

The count for each NRC emotion category distinguished by the analysis is shown in Figure 2. The most common emotions expressed in the comments were anticipation, trust, and joy. Fear, sadness, surprise, disgust, and anger were the least common emotions. Moreover, for the “worth it” group, the most common emotions expressed were anticipation, trust, and joy. In the “not worth it” group, anticipation and trust were also commonly expressed, but for this group, fear was salient. Finally, Figure 3 depicts the NRC sentiment scores by year. Our results show that over time, particularly since 2020, NIPT-related comments increased. Moreover, in general, people expressed more positive emotion than negative emotion.

Social media platforms such as Reddit have emerged as important platforms for health information sharing [25]. Although NIPT has garnered considerable attention on social media, only a few studies have characterized public perceptions of NIPT using social media as a data source. Accordingly, the purpose of this study was to understand public opinions, attitudes, and emotions toward NIPT on Reddit using novel content and NLP techniques (i.e., sentiment analysis). Our content analysis findings indicate that social media users consider NIPT to be beneficial and desirable. Reasons it was perceived to be not worthwhile related to unwanted anxiety/stress, and the fact that NIPT results would not change anything about their approach to pregnancy were also expressed. The sentiment analysis results revealed that social media users generally expressed more positive than negative emotions toward NIPT and also exhibited an emotional trade-off when reflecting upon NIPT. These findings hold significant implications for research, clinical practice, and policy.

Our findings regarding the types NIPT-related questions asked on social media platforms align with previous related research [10]. The most frequently asked questions were about the timing and mode of delivery of NIPT results, followed by questions about cost and the general value of NIPT. In related work, researchers investigated the factors that could impact pregnancy decision-making by conducting interviews with 38 Canadian women [1]. The study found that when discussing NIPT, women place importance on the timing of NIPT and its general value and that these factors play a crucial role in determining whether prospective parents decide to undergo NIPT. Researchers also found that Reddit users discussing NIPT most frequently focused on topics related to its general value, test performance, timing, cost, and delivery (e.g., the type of provider that explains, order, and returns test results) [10].

On Reddit, NIPT is viewed as a more beneficial test than other prenatal screening tests, supporting findings reported in the related literature [10, 26]. For example, a mixed methods study conducted by Bowman-Smart et al. [26] revealed that women in Australia had largely positive experiences with NIPT, with 95% indicating their willingness to undergo NIPT in a future pregnancy. Our findings further indicated that people emphasized the significance of NIPT in terms of providing peace of mind, valuable information, mental and logistical preparation, and identification of fetal sex. Researchers reported similar results from focus groups, indicating that women perceived NIPT as advantageous over other screening methods due to its accuracy, early timing, ease of testing, and ability to determine fetal sex [27]. Additionally, the noninvasive nature of NIPT was seen as an advantage over invasive diagnostic tests.

Some, however, expressed reasons for which NIPT was not worthwhile. People specifically stated that they did not believe their pregnancy was at risk, emphasizing the importance of providing clear and balanced information about the benefits and limitations of NIPT, as well as alternative prenatal testing options. Since people are less likely to consider NIPT if they do not believe their pregnancy is at risk, opportunities for early detection of or intervention for potential genetic conditions may be missed. Furthermore, NIPT may increase anxiety and stress and may not make a difference with respect to pregnancy management. Researchers discovered comparable outcomes, showing that although NIPT is simple and accurate, women still perceived the testing process as anxiety-inducing, stressful, and fraught with uncertainty [27].

Finally, individuals have expressed reasons for which NIPT was not worthwhile related to accessibility [28]. In particular, in some countries, the cost of undergoing NIPT is prohibitively high, which may lead to low rates of uptake, particularly among those who believe their pregnancies are not at risk [29]. Restricting the availability of the test to only those who can afford it represents an equity concern [1]. A study conducted by Birko et al. [30] also found that a major barrier to the wider adoption of NIPT included its limited access and high cost, with the majority of women and their partners, stating that if NIPT were offered free of charge, it would have a “lot of impact” on their decision to utilize this technology. Therefore, while policy decisions regarding the widespread use of NIPT should be informed by evidence of performance and efficacy, patients’ desire for the test, as a marker of public acceptability, is a key consideration. Furthermore, our findings indicated that people are making a trade-off when it comes to NIPT, acknowledging associated concerns while still considering it a worthwhile option. Hence, the data from Reddit align with previous studies that identified this trade-off [30].

The results of our sentiment analysis were consistent with those of the content analysis, indicating that individuals expressed more positive emotions than negative emotions when discussing NIPT. It is notable that “anticipation,” “trust,” and “joy” were the sentiments expressed most often. Specifically, based on Plutchik’s Wheel of emotions, anticipation is typically associated with sensations of being alert and exploring, which indicate “change is happening” [31]. Trust is typically associated with sensations of warmth, which indicates “this is safe.” Lastly, joy is typically associated with sensations of energy and possibility, which “sparks creativity, connection, and gives energy.” In this context, the expression of joy could indicate that the comments are related to content or experiences that are uplifting, exciting, or inspiring. Furthermore, the presence of minimal comments expressing disgust or anger suggests that the discussions are less focused on reacting negatively to NIPT. Therefore, as discussed above, anticipation is typically associated with sensations of being alert and exploring [32]. This could be interpreted as an expression of the uncertain nature of NIPT results. Additionally, the feelings of trust and joy are considered positive emotions [32] and align with research, indicating that the majority of individuals view NIPT as a valuable tool [33].

Nonetheless, Redditors also reported experiencing feelings of “fear” while discussing NIPT, especially those who believed NIPT was not worthwhile. Fear is commonly linked to sensations of stress, which aligns with the finding that some individuals may perceive NIPT as anxiety-inducing, stressful, and uncertain [27, 32]. Additionally, sadness is associated with feelings of disappointment and loss, which could be due to individuals receiving positive results or feeling dissatisfied with the NIPT process or outcomes [32]. Overall, the findings of the sentiment analysis aligned with those of the content analysis and previous patient-oriented research [33].

We speculate that the increased frequency of comments over time, since 2020, is likely related to the idea that individuals became more inclined to communicate and exchange information through social media during the COVID-19 pandemic lockdown [34]. A systematic review conducted by Chee et al. [34] supports this notion, indicating an increasing trend of pregnant and new parents engaging in discussions about prenatal care on social media platforms, especially during the pandemic. Furthermore, there has been a notable increase in the frequency of comments, particularly in 2022. This may be related to the dramatic overturning of Roe versus Wade in the USA in June 2022 [35] and/or the publication of the American College of Medical Genetics and Genomics guideline endorsing the use of NIPT for individuals of average/population risk of chromosome aneuploidies in May 2022 [36]. It is possible that these events triggered heightened conversation about prenatal care in general and about NIPT in particular among social media users.

From a research perspective, our study indicates that sentiment analysis could be a valuable tool for patient-oriented research as it allows researchers to gain insight into how individuals perceive and emotionally respond to various healthcare experiences [37]. By analyzing language and tone, sentiment analysis can identify the prevalence and type (i.e., positive or negative) of sentiments in large amounts of text data, in turn providing a quantitative measure of emotional response [38]. For example, researchers investigated the public’s views regarding colonoscopy, mammography, and Pap smear procedures on Twitter by using sentiment analysis. Their findings revealed that tweets associated with colonoscopy were more inclined toward expressing a negative emotion compared to a positive one. Conversely, discussions surrounding mammography predominantly conveyed a positive emotion. These findings are relevant to adjudicating the acceptability of a screening test from the perspective of the target population.

From a clinical practice perspective, our findings contribute another source of evidence supporting efforts to tailor NIPT education materials and counseling strategies to patients’ needs [27]. For example, existing educational resources could be adjusted to incorporate questions generated by social media users to assist individuals in making informed decisions about whether to undergo NIPT. Similarly, counseling strategies could be informed by social media users’ perceptions of the trade-off between reasons for which NIPT is or is not worthwhile, thereby expanding and fine-tuning their applicability to a broader range of patients, enhancing patient-centered care.

From a policy perspective, our research suggests that NLP techniques (i.e., sentiment analysis) can contribute to a more comprehensive understanding of the societal impact of new technologies, such as NIPT. In addition to direct patient engagement methods, like those used by health technology assessment bodies internationally [39], applying sentiment analysis to data generated by social media platforms is a novel way to gain a more complete understanding of how a new technology aligns with societal values, a critical criterion in health technology assessment. This is particularly true given the increased public discourse on social media on this topic over time. The reported feelings of “fear” and “sadness” among Redditors in the context of discussing NIPT are important considerations for policymakers and healthcare providers. For example, in the presence of psychosocial concerns, policymakers can advocate that NIPT only be offered within a system of care that is sufficiently resourced to attend to patients’ psychosocial concerns (i.e., through counseling expertise, patient support groups, educational material).

Evidence from the current study provides insights into public opinions and emotions toward NIPT on Reddit; however, some limitations warrant acknowledgment. First, we only collected data on Reddit. While Reddit outperforms other social media platforms in terms of user numbers and data quality, other social media platforms (e.g., Twitter, Facebook) include relevant data [36]. Future research should include other social media platforms in the exploration of public perceptions of NIPT. In addition, we searched for NIPT-related topics on four subreddits, which may have bias. Specifically, each subreddit represents a unique community with its own demographic, cultural, and contextual characteristics. Thus, the reasons not worthwhile and opinions expressed in these subreddits might not accurately reflect the sentiments of the broader Reddit user population. Verifying our findings with additional subreddits would improve their generalizability. Furthermore, due to Reddit’s privacy safeguards, we were not able to examine Redditors’ demographic information, limiting our ability to understand and compare attitudes toward NIPT across country, age, gender, and other sociodemographic characteristics. In addition, as new guidelines are increasingly endorsing the utilization of NIPT in the average-risk population, public opinions regarding NIPT might undergo a shift. Therefore, it is crucial for future studies to continue investigating the public’s opinions and attitudes toward NIPT. Finally, we conducted sentiment analysis using lexical-based methods. According to experts in this methodology, it is possible that substantive and nonneutral words are missing from a given lexicon [40]. Although we used multiple lexicons in our analysis to mitigate this limitation [41], the possibility of a word being misspecified within a lexicon remains [42]. Other machine learning methods (e.g., deep learning) should be used in future studies to further understand public perception of NIPT.

Limitations notwithstanding, our novel approach to understanding public perception, attitudes, and emotions toward NIPT generated findings that align with traditional patient-oriented research methods and contribute to ongoing efforts to optimize patient care, research, and policy in prenatal care.

Because all data were available in the public domain, Research Ethics Approval was not required.

The authors have no conflict of interest to declare.

This study was not supported by any grant. Robin Z. Hayeems is supported by a Canada Research Chair in Genomics and Health Policy (Tier 2) and is a member of the Ontario Genetics Advisory Committee and the Ontario Provincial Genetics Advisory Committee.

Bowen Xiao: software, validation, formal analysis, data curation, writing – original draft, and writing – review and editing. Joyce Yan: formal analysis, data curation, writing – original draft, and writing – review and editing. Robin Z. Hayeems: conceptualization, methodology, writing – original draft, writing – review and editing, supervision, and project administration.

Data are not publicly available due to ethical reasons. Further inquiries can be directed to the corresponding author.