Exploring the Impact of Social Media on the Mental Health and Wellbeing of Donor-Conceived Individuals

Lauren WienerNicole FeigenblumAntonia F Oladipo^*

• Hackensack University Medical Center, Hackensack, United States

This Commentary highlights the lack of social media representation for the growing community of donor conceived people (DCP). In the past, the clinical and academic focus has been on those who are donating gametes or using donor gametes.As the population of donor conceived individuals grows, awareness must shift. The different methods in which individuals create families has become more accepted.There has been a pivot from secrecy to openness, especially in light of genetic testing being widely available. This group of individuals is navigating unknown terrain and are simply looking for a community who best understands them and their experiences. In the age of social media, it is easier than ever to create connections with people worldwide. DCP have begun to explore social media as a method to find community. Thus far, Facebook has been the most commonly used forum, but there are other platforms, such as Instagram and YouTube, that other groups have leveraged to promote community and belonging, for which the DCP community can model after.Social media used for connecting likeminded individuals who share values and experiences can boost mental health, especially for the DCP community, where it may be more difficult to find support in real life. With this said, it is however important to take caution when utilizing social media to ensure these platforms are used responsibly to maintain their benefit.The use of donor gametes has allowed people to create families in situations where it would otherwise not be possible. Previous research in this domain has focused on patients who use donor gametes to conceive. However, in the age of the internet and direct-to-consumer genetic testing, anonymity and secrecy are no longer guaranteed. This is changing the landscape of donor conception, as people are discovering their status of being DCP, as well as the creation of new families with this lack of anonymity in mind (15). The focus is now shifting to the needs and perspectives of offspring conceived using donor gametes with a focus on counseling (1,15).Being a DCP often means that a part of one's identity is concealed or lost due to a lack of knowledge as to where half of their genetic makeup comes from, which can, at times, be difficult to cope with and many DCP express this dissatisfaction (2). In one study, DCP reported a lack of trust in their family and a desire for talk therapy to discuss their experiences with an uninvolved party (3). Since family can be hard to turn to, due to their role in creating the scenario in which the child was conceived, and their lack of personal experience in the same situation, DCP often turn to mental health providers for emotional support. Many mental health providers feel ill-equipped to appropriately counsel and support these individuals and have expressed a desire to have more specialized training in order to meet the needs of the DCP community (3). These specific needs are still being explored. Currently, there is no consensus on what is best for this community, regarding donor information sharing, as well as disclosure timing and therapy recommendations (17). A systematic review found that beginning in the 1980s DCP became increasingly vocal about their interest in information regarding genetic and biological heritage. The industry followed suit by looking to adoption "best practices" for recommendations suggesting that transparency and openness were coming to light in the DCP realm (4,16). However, many studies do not come to a definitive conclusion on this level of interest, given that each DCP's experience is unique (4,17). The United Kingdom and Spain have opposing laws regarding the practice of donor conception -the United Kingdom prohibits anonymity and Spain mandates anonymous donation. Both countries have the desire to protect the interests of DCP but have a different interpretation of how to best go about it (5). Both have been found to protect the DCP interest for family and health, and thus raise the question if anonymity is a barrier to transparency and openness. These two different approaches, mandating anonymity or banning it, both consider the wellbeing of DCP, suggesting that there are likely additional factors that contribute to DCP's positive mental health, regardless of access to identifying donor information. For example, there are various cultural and family dynamics that affect a parent's choice when or what to disclose to their child (20). In addition, every DCP is an individual with a unique background, all of which affects their feelings towards their status as being donor conceived (21).Mental wellbeing refers to a person's satisfaction about themselves, as well as positive interactions with those around them. This requires self confidence, positive outlook, clear thinking, feeling close to others, being relaxed, and having the energy to do all of the above (6). Having mental wellbeing allows a person to be able to function well in society and feel fulfilled in doing so. There has been increased emphasis on mental health and how to promote it, but first it is necessary to understand what factors play a role in affecting mental health.In the 21st century, social media is prevalent in our daily lives starting from a young age. It is a way to connect instantly, both locally and worldwide. Since connection is a major part of mental wellbeing, it is no wonder people seek online communities, especially when it is difficult to find like-minded individuals in one's day to day life (18,19). This is especially true for mental health support and other ailments that affect those who live in rural areas. One study showed that adolescents in rural areas have turned to social media to guide them on how to find support. The study found that in this population, social media allowed for connections to be made and information and advice to be shared between those who lacked such in-sync individuals in their mundane lives (7). Research into who actively searches for an online community has been proposed using a model, suggesting that those who feel stigma, isolation, symptoms of mental illness, and who fear reaching out, are the ones who actively search out these online communities (8). The model continues to describe how an online peer group acts to challenge stigma and increase togetherness, which then works in a cyclical nature to increase use of the platform and share ideas on how to access additional interventions for improved mental and physical wellbeing (8). This model could be a way to spread awareness for support that is available specifically to DCP and a way to increase interaction with those who may not be aware of such resources. Social media platforms such as Facebook, Instagram, YouTube, X (formerly known as Twitter), Tik-Tok and many others allow for information sharing and social networking, creating a unique environment to foster a sense of belonging with peers, contributing to positive mental health (26).There are multiple studies that question if the benefits outweigh the risks when it comes to using social media in mental health communication. Benefits of social media include connection, sharing, and support, while the concerns include privacy and lack of credibility (9). Social media is a revolutionary change in our world, but there does not seem to be a consensus on the way social media influences wellbeing. The discordance is explained by the fact that social media is not inherently good or bad, but a tool, and how it is utilized and wielded will determine its effect on wellbeing (10). Adolescents seem to be open to using social media for such effects and feel it can have great potential if done in the proper way (23) Instagram has been explored, in one qualitative study, as a means for visual storytelling to foster social support in vulnerable healthcare consumers, specifically breast cancer patients and survivors. It demonstrated that sharing information via storytelling can normalize aspects of their experience that might not otherwise be common knowledge, such as procedures and recovery processes. It also became a way to share resources and to support one another (11). Further application of this idea could contribute to wellbeing in other groups using Instagram for storytelling.YouTube has also been investigated as a resource for social connection.LGBTQ+ YouTube exposure was found to contribute positively to self-esteem inLGBTQ+ individuals, suggesting that YouTube can serve as a space for community building and this connectedness is correlated to higher self-esteem (12). The qualitative aspect of this study found that watching the videos provided an alleviating effect from the stresses of daily life. Members who identify with the LGBTQ+ community were better able to relate to others who also identified as part of the LGBTQ+ community, whether it was celebrities or fictional characters, both of which are nonreciprocal, or parasocial, relationships. Indicating online relationships, reciprocal or not, create a sense of connection that can be maintained online, which in turn provides improved self-esteem (12).These studies open the door to explore additional avenues that promote wellbeing, especially in communities that rely on connections. Facebook has been the primary method evaluated in previous research, but Instagram and YouTube have shown to be able to provide this connectedness just as well. These platforms should be leveraged for those DCP desiring camaraderie as a way to increase mental wellbeing.Community and family connections have been described as valuable within the context of the DCP population. Andreassen et al. describes the impact of Facebook in community creation between created families that include donor conceived children.The qualitative analysis of a Denmark-based Facebook group discussions was performed and included interviews of members to discover how the social platform led to new understandings of the definition of family (13). By creating a community for families to connect with their donor siblings,they have reported flourishing kinship and a sense of familial inclusion. The societal norms of what a family should be are challenged by the nontraditional families in this group creating a family of their own. Although the study provided insight into family and connection, it lacked the assessment of the mental wellbeing status of DCP and donor conceived families (13).Facebook groups provide a platform for connection between DCP, as this community may be difficult to find in real life. One private Facebook group for DCP only found that humor and memes (image, video, piece of text, etc., typically humorous in nature, that is copied and spread rapidly by internet users, often with slight variations) are common forms of coping mechanisms (14). The meme group reinforced a sense of belonging to the donor conceived community and allowed members to not feel alone in their values and feelings regarding their donor conceived status. ( 14). This study demonstrated the power of connection via social media and humor, especially in the group that is DCP. Other platforms such as Instagram, YouTube and TikTok have not yet been explored in the literature as a resource for DCP to improve wellbeing through forming connections. However, some of these have been proven in other contexts to provide community and therefore enhance wellbeing (24,25,26). Many social media platforms allow for story sharing that could be used in a similar way for this group, who desires peer connection and seeks ways to improve wellbeing.DCP make up a unique faction of the population who, like any other group, are looking for belonging and a sense of community. Finding others in a similar situation can be especially important for this group that tends to struggle with identity, which plays a substantial role in mental wellbeing. Facebook has been shown to be a space for DCP to connect and share support (13,15). There are other forms of social media that have shown to promote wellbeing via stigma reduction, peer support, advice, and awareness of interventions (7,8,11,12,27). By understanding what can improve the wellbeing of DCP, including how they use social media and peer groups, interventions can take place to ensure that this growing population is aware of these online communities and platforms. There are, however, precautions that are necessary to take when using online platforms that are outlined by many sources such as the Cybersecurity and Infrastructure Security Agency and Rape, Abuse and Incest National Network websites.DCP should take advantage of social media, and providers should encourage this use, to continue to foster wellbeing through awareness and connection. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.