Teen Reproductive Health Information Seeking and Sharing Post-Roe

According to the World Health Organization (WHO), reproductive health encompasses overall "physical, mental and social well-being and not merely the absence of disease or infirmity, in all matters relating to the reproductive system and its functions and processes" [79]. The WHO is concerned not just with reproductive capabilities but also "the freedom to decide if, when and how often to do so," emphasizing the importance of having the ability to make informed decisions about one's reproductive health.

An important component of reproductive health is menstrual literacy. Eschler et al. define menstrual literacy as having "a baseline of knowledge and skills for understanding anatomical and biological facts of menstruation, caring for the menstruating body, and completing menstrual care tasks" [24]. This paper draws on this broader framing of reproductive health as encompassing knowledge or literacy about one's reproductive system, particularly one's menstrual cycle, and effective contraception, which is critical to making informed decisions to guide the analysis.

In the U.S., reproductive health education for teens varies significantly from state to state due to local and school district policies, as well as parental preferences. It is the subject of never-ending controversy and debate. First, the requirement for sex education is itself variable, with some states requiring sex education and others allowing districts to decide whether they want to provide it at all [31]. Where it is necessary, sex education varies widely across the country in terms of content and quality [31, 34, 37]. That said, sex education in the U.S. is mainly split into two approaches: abstinence-only-until-marriage (AOUM) [64] and comprehensive sex education (CSE) [27].

Approximately half of the adolescents (aged 15-19 years) in the U.S. receive sex education that meets the minimum standard outlined in current national goals [41]. A significant number of adolescents either do not receive instruction on crucial reproductive health-related topics such as puberty and the physiological changes associated with it, effective contraceptive methods and their usage, the significance of practicing safe sex to prevent sexually transmitted infections (STIs), and the importance of healthy relationships and consent; or receive it only after their first sexual experience [41]. Moreover, these gaps in sex education are uneven, with gender, racial, and other disparities being widespread [41, 65]. This underscores the necessity to address not only the biological aspects of sexual health but also the broader societal and systemic influences that shape adolescents’ experiences and understanding of their own sexuality. Sexual health education can promote a more equitable and inclusive environment for all youth, fostering informed decision-making and well-being [65].

Access to reproductive health education in the U.S. does not necessarily encompass the broader definition of knowledge that equates to choice. Our research is particularly concerned with whether teens pursue that knowledge elsewhere (particularly online) and if the avenues for discovery are hampered by recent events.

Reproductive health education in classrooms remains deficient, and many curricula still perpetuate stigma and sex stereotypes among adolescents. A recent study suggests that teens often turn to internet sources over doctors, parents, and teachers to get information regarding reproductive health [3, 13]. Most often, they are turning to Planned Parenthood for information about reproductive services (including abortion), and it has sites dedicated explicitly to teen reproductive health. However, the study also finds that teens struggle to recall where they go or vaguely remember Google and social media platforms [13].

Thus, with the widespread usage of internet technologies among teens in the U.S. and worldwide, sexual health information has become more accessible [11, 61, 77]. But there is still a need for more comprehensive, accessible, and local sex education that teens can navigate in a divisive and variegated educational and legal climate, leaving a gap to be filled by technologies—including social media, which may be addressed through the integration of technology into educational approaches [72].

Menstrual tracking is one important way that adolescents learn about their reproductive health. Yet Eschler et al. find that many popular period tracking apps fall short of providing this kind of literacy, particularly for teens and Gen Z users [24]. The question remains: where do teens go for reproductive health information, and how does it contribute to their reproductive literacy?

Other research on reproductive health education, although not about teens, is instructive in emphasizing the way that reproductive health learning can be as much, if not more, a social experience as a bodily one [17, 39]. It's important for any study investigating teen reproductive health information seeking behaviors to take a holistic approach, examining how lived experiences, culture, and social relationships influence their pursuit of online reproductive health information. Even while teens may be increasingly turning to online sources that provide local and possibly contextualized knowledge [3, 13], we don't know what prompts them to seek this out, whether it is indeed correct or adequate or the social context in which it is received and understood.

The overturning of Roe v. Wade has brought attention to significant deficiencies in data privacy in the U.S. [29]. Reproductive health technologies are notorious for selling information to third parties like Facebook and Google [15]. The sensitive data gathered by fertility tracking apps is disseminated without users’ awareness or consent, posing significant potential risks, particularly in a post-Roe era [4, 6, 12, 51]. This unauthorized sharing of intimate information could lead to substantial harm and prosecutorial risk [35, 55, 63].

The privacy concerns of menstrual apps in particular [67] were, in the aftermath of Roe v. Wade, cast in a new light of legal risk [26, 69], changing the way that people view them [54] and causing many to delete them [46]. Of course, we know that there are reasons to be concerned about other data associated with reproductive activities, including location data [19], search histories [28, 71] as well as conversations had over social media and messaging apps [35, 63]. This raises important questions about how we think about solutions for teens who may very well struggle with protecting themselves against the privacy harms associated with reproductive health apps [50] and may not be informed about the broader risks of using any technology in this ever more complex terrain.

Studies on reproductive health from other cultures are particularly instructive, given that recent changes in U.S. law have further stigmatized and increased the risks associated with reproductive health.

Drawing on Kumar et al.’s guidance that we take the "long, holistic, and intersection view" [38] to study reproductive health information seeking, we turn to work on reproductive literacy in India to understand how reproductive learning is accomplished in stigmatized contexts. In their study of menstrual tracking practices, Tuli et al. [74] found that few teens actually track their periods but do overwhelmingly turn to their mothers for guidance about their periods. Tuli et al.’s other work has demonstrated the way in which there is not always consensus on who will be teaching adolescents and at what stage [73]. Building on this work, Tuli et al. [72] studied Menstrupedia, a platform for supporting menstrual literacy among an Indian audience.

Notably, other research finds that educated youth in India reported the internet as their preferred source for seeking information about sexual and reproductive health, as compared to asking friends, family, or doctors, and say that lack of privacy prevents them from seeking reproductive health care [43]. In this context, the inability to openly discuss reproductive health creates hindrances to awareness. The question we should be asking in the U.S. is whether social stigma and concern about even having conversations with family and friends for fear of prosecution [55] might overall hamper awareness and information seeking.

As Kumar et al. have also pointed out, women's well-being is not just a matter of information access but requires a holistic rethinking of the challenges that individuals face, which shape their encounters with that information [38]. For example, numerous studies of female adolescents in Ethiopia reported that poor communication with parents on sexual reproductive matters was a barrier to seeking services [1, 30, 70]. We don't know the extent to which social and parental relationships shape online reproductive information seeking in the U.S., particularly post-Roe. We suspect that parental relationships may be even more critical when there is uncertainty surrounding the ever-changing laws enacted by states and mounting digital risk [63], particularly targeting teens [20].

Given that these environments often stigmatize reproductive health, they offer valuable insights into how teens navigate information seeking in hostile climates, similar to the current situation in the U.S. This research aims to bridge the gap in understanding how teens seek information under these new adverse conditions, adopting a holistic approach to do so.

We conducted sensitive interviews about reproductive information seeking during a time when abortion is illegal in some parts of the U.S. As a result, we do not provide the name of the recruitment service to ensure the confidentiality of our participants. In addition, we did not obtain participants’ email address or full name. We recorded interviews on our phones. Honorarium were distributed through the recruiter. Audio recordings were deleted after recordings were transcribed. All procedures received approval by our institution's IRB.

We conducted 15 interviews off-video over Zoom, which were audio recorded separately and uploaded to a shared secure folder where the researchers could listen and transcribe them. The assent as well as some more sensitive conversations were done off-record. The recorded portion of the interviews was an average of 27 minutes and lasted between 14 minutes and 50 minutes.

Following each interview, researchers wrote memos and shared those with the other researchers. This helped to ensure that we were probing consistently across interviews. The analysis employed reflexive thematic analysis (RTA), where the first two authors open coded concepts that would ultimately become the themes described in the findings [9, 10].

The open coding process of the data analysis was done collaboratively by the first two authors who regularly met to share their codes and accompanying quotes, develop candidate themes, and construct a plausible and compelling narrative involving these themes. The first two authors met with the third author at various points during this process to discuss themes. Consensus was reached through discussion.

Following the guidance of McDonald et al. we did not use a codebook or inter-rater reliability because our codes were a "process not the product" to be tested in future study or used by other researchers [49].

RTA allows for the researchers to draw on their domain expertise and personal experience to tell a story about the data [10]. The themes we developed represent patterns of codes in the data grouped into concepts, like the impact of being sexually active, one's state or laws and the combination of age and cultural norms on perception of risk as it relates to reproductive health information seeking and sharing. These themes represent concepts that are most salient, not necessarily most frequently encountered.

Braun and Clarke have noted that data saturation—often operationalized as redundancy—does not sit comfortably with the epistemology of RTA. Because meaning is "generated through" thematic analysis not "excavated from" the data, decisions about how many participants are necessary to complete data collection are highly subjective [8]. We felt that after 15 interviews, we had crafted themes that told a compelling story about the data—in other words, we had achieved meaning saturation. Finally, we take a phenomenological approach, bracketing our experience and privileging those of our participants [66].

Although we developed themes inductively, McDonald and Andalibi [46] served as a deductive interpretive frame that guided our thinking about information seeking and sharing as it related to reproductive risk, age, culture, and law. While all of our participants were much younger than those McDonald and Andalibi interviewed, and most were not sexually active, even among this young cohort age difference did influence information seeking and sharing behaviors, which we describe in detail in our findings.

In this section we provide context for participants’ reproductive health information seeking and sharing practices. The teens we spoke with generally prefer online sources of information about reproductive health but also turn to offline sources, namely their mothers.

After Roe v. Wade was overturned, participants describe being flooded with (mis)information and opinions about abortion, especially online.

Teens, particularly Black/POC, often turn to their peers on social media for contextualized guidance about reproductive health information that they then contrast with reputable sites.

Guidance: Reputable sites that publish reproductive health guidance might consider incorporating valid intersectional experiences shared on social media and in a creative way (e.g., [72])—taking into account infrastructures, structural barriers and literacy, not just access [38]. Even if that information is there, teens are not finding it.

Despite their efforts to seek out reputable information, however, teens sometimes overlook information and are uninformed about how Google search works—imagining that top results are the most reputable and are not biased [56].

Guidance: Teens are trying to juggle scientific data with lived experience, and they need guidance about how Google search algorithms work and ways that they can find the customized reproductive information they are seeking and which is appropriate for them. Indeed, it's simply not clear that they are using Google search in a way that is leading to helpful sources of information [13].

It is clear, however, that, unlike studies we reviewed (e.g., [1]), mothers can be a primary source for guidance and are potentially important resources or audiences for online information that is shared with teens. But while it is clear that mothers (and friends, siblings, and close confidants) have an important role to play in information seeking, they are also resources that come with certain risks that need to be balanced.

Guidance: Given that conversations with mothers and close relatives can put teens (and those they speak with) at risk (e.g., [35, 63]), particularly in states that are considering or have enacted "abortion trafficking" laws for anyone that transports teens across state lines to receive an abortion [32], it will be important to consider how to encourage these conversations and provide privacy threat model related guidance to mitigate prosecutorial risk.

Teens researched their period apps and discovered reasons for concern, but ultimately concluded they were safe enough to use. Often, this conclusion arises because they perceive their sexual activity or orientation put them at low personal risk. Several participants express this view, particularly regarding widely used apps like Flo, the Period & Ovulation Tracker, which was recently charged by the Federal Trade Commission (FTC) with sharing information with third parties such as Facebook, Google, and others [15]. According to the Electronic Frontier Foundation, Flo's privacy policy also stipulates that it may share information with law enforcement [26]. One of the most downloaded free apps on the Apple store during post-Roe 2022, which positioned itself as privacy focused, said that it would voluntarily hand over data to law enforcement [14]. The Department of Health and Human Services (HHS) warns that any health information stored on third party apps and devices is not protected by the Health Insurance Portability and Accountability Act of 1996 (HIPAA) [62]. Indeed, the lack of concern about virtually any other reproductive health-related data on one's phone, wearables or other devices, not to mention any other data [16] that can be used in prosecution such as search or purchase histories, tracking data, social media or messaging data [63] is also concerning.

The decision to not delete period tracking apps seems to be mediated by participants feeling that they are not as much at risk because of their sexual activity. Yet it's not clear that teens readily engage in the type of threat modeling that is required to gauge these risks [50].

Guidance: These findings point to three different prompts for reflection. First, teens tend to rely on both source texts (e.g., privacy policies) and highly subjective accounts on social media like TikTok. For instance, propelled by TikToks stating their dangers, they may go to a period tracking apps’ website only to find that their privacy policy seems to be safe. What they seem to be missing is a critical investigation from the media or advocacy sites that have rehearsed these threat models (e.g., [23]).

Second, and related, it's clear that teens are able to think about immediate risk as it pertains to their information-sharing practices but struggle with the downstream risks. Other literature points to the way that teens are aware of long-term risks but maybe ignore them [36]. Yet teens are able to think about their friend's risk. This is something that should be built on when designing information and privacy literacy tools mentioned above that could be created by advocacy organizations. Teens need to be given the tools to threat model the risks, combining their preference for seeking out privacy policies with threat models that speak to their circumstances and context.

Third, it is clear that threat modeling the risks of surveillance beyond period apps is needed. Period tracking apps sell period data, but there are numerous other data sources that can be utilized to surveil and prosecute [16], including, for example, search and location data [19, 76, 82], abortion pill purchases [28] and other online activity related to reproductive health [55], social media and messaging data [63], and medical records that are stored on third party apps [62] or shared across medical databases [83].

Many teen participants are attuned to the risks associated with reproductive health information seeking and sharing online, and these have to do with reproductive risk, social norms, and laws [46]. The chilling effects of these risks are often more pronounced among those in restrictive states, or who could imagine living (or have lived) in them [46].

Understandably, there are many facets to "technology literacy" that are triggered by risk necessary to achieve and safeguard reproductive health, especially given the numerous and highly varied threat vectors to which menstruating people are exposed.

Guidance: Researchers and advocates may want to consider framing "reproductive literacy" in a broader context of risk (or "long, holistic, and intersectional view" [38]) that encompasses technology privacy, social, cultural and legal risks. For instance, what are the implications of identity when it comes to reproductive information seeking? Are there certain populations that need more help because their past experiences have hampered their trust? When one encounters a crisis pregnancy center online, they not only collect data that can be used by law enforcement [2, 53], they also plant misinformation and create delays [44, 78] that in turn raise the stakes and burden for accessing healthcare and also create additional incriminating data points.

FemTech has a role to play in educating teens about the risks to their reproductive health, and these designs require more intersectional and local cultural nuance [38, 72, 74]. Post-Roe, privacy concerns have further complicated the design requirements of FemTech, not only to be more privacy protective, and in a tailored way, but also to take more seriously their role in reproductive literacy as a form of protection against prosecutorial risk.