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. Author manuscript; available in PMC: 2021 Aug 5.
Published in final edited form as: J Genet Couns. 2017 Nov 13;27(2):470–480. doi: 10.1007/s10897-017-0170-z

Incorporating Social Media into your Support Tool Box: Points to Consider from Genetics-Based Communities

Heather Mae Rocha 1, Juliann M Savatt 1,2, Erin Rooney Riggs 2, Jennifer K Wagner 3, W Andrew Faucett 1, Christa Lese Martin 1,2
PMCID: PMC8340936  NIHMSID: NIHMS1723038  PMID: 29130143

Abstract

Patients with newly-described or rare genetic findings are turning to social media to find and connect with others. Blogs, Facebook groups, and Twitter have all been reported as tools for patients to connect with one another. However, the preferences for social media use and privacy among patients, their families, and these communities have not been well characterized. To explore preferences about privacy and membership guidelines, an online survey was administered to two web-based patient registries, Simons Variation in Individuals Project (www.simonsvipconnect.org) and GenomeConnect (www.genomeconnect.org). Over a three-month period, invitations were sent to 2,524 individuals and 103 responses (4%) were received and analyzed. Responses indicate that Facebook is the most popular resource accessed within this sample population (99%). Participants used social media to look for information about their diagnosis or test results (83%), read posts from rare disease groups or organizations (73%), participate in conversations about their diagnosis (67%), and connect with others to find support (58%). Focusing on privacy issues in social media, respondents indicate that membership and access impact the level of comfort in sharing personal or medical information. Nearly 60% of respondents felt uncomfortable sharing photos or medical information within a public Facebook group, whereas only 12% of respondents felt uncomfortable sharing in private group targeted to families alone. Using this preliminary data concerning social media use and privacy, we developed points for genetic counselors to incorporate when discussing available support resources for patients with a new, or rare, genetic diagnosis or genetic test result. Genetic counselors are trained to provide anticipatory guidance to families adapting to new genetic information, and are well-equipped to help patients consider their preferences about using social media as a source of information and support.

Keywords: Social Media, Genetic Counseling, Support, Rare Disease, Facebook

Introduction

A disease is defined as rare when, in the United States, it affects fewer than 200,000 people (U.S. Food & Drug Admistration, 2013). An estimated 80% of rare diseases have a genetic component (Field and Boat 2010). With the increasing availability of genomic testing, an increasing number of genomic variants are being identified in individuals with rare diseases. When a medical condition is rare or genomic variant novel, detailed medical information might not be broadly available. Multiple studies have shown that individuals and families can feel isolated and as though there is a lack of available information regarding their disease or genetic test results (Lee et al. 2010; Sarasohn–Kahn 2008; Zurynski et al. 2008). Through social media, individuals and families can communicate about shared concerns, provide guidance and advice, and share stories about success and hardships. People with rare diseases and rare genomic variants are increasingly turning to the internet and social media to learn about their medical conditions (Nicholl et al. 2017; Fox 2011.)

Social media is a powerful tool for connecting and engaging with other users from across the world; Nearly 70% of all Americans that access the internet use social media, and more than 75% of social media users report being on Facebook at least once per day (Pew Research Center 2016). Its use to inform healthcare has increased over the past several years (von Muhlen & Ohno-Machado, 2012). Several studies have characterized social media use by individuals with more common medical conditions including chronic pain, arthritis, cancer, diabetes, depression, and heart failure (Greene et al. 2010, Merolli et al. 2008; Naslund et al. 2017; Radovic et al. 2017; Ravert et al. 2004; Sayers et al. 2008; Shensa et al. 2017). Previous studies have highlighted that patients utilize social media to obtain and disseminate health information and answers to medical questions, facilitate connections between multiple patients and health professionals, share their experience, and reduce stigma (Moorhead et al. 2013; Moore et al. 2017). By using social media, patients with more common conditions have benefited through more interactions with others, increased access to more personalized information, access to social and emotional support, available information about public health screenings, and potential influence on health policy (Moorhead et al. 2013). Because social media tools are designed to make it easier to connect with others based on shared interests, these platforms might also be a valuable resource for patients in the rare disease community or those with rare genomic variants, where rarity of the condition or variant and geography are barriers in identifying similarly affected individuals (Pew Research Center 2016).However, little information exists to describe how patients with rare genetic conditions, diagnoses, and/or test results seek out information and support through social media and whether they experience the same benefits.

Patients and parents are becoming increasingly aware that social media can facilitate connections between patients with rare conditions (Might 2012). One father’s success story went viral after his family identified other children with variants in the same candidate gene through his personal blog, thus enabling characterization of a new, rare genetic condition and catalyzing further research pertaining to this rare disease. A patient blogger from The Mighty, an online community for individuals with disability, disease and mental illness writes:

“The internet and social media have made it possible for members of the rare disease community to more easily connect with others around the world who have the same condition. We can provide support for each other, discuss different treatment options, and be a soundboard for when we have to make difficult medical decisions” (Harman 2017).

Patients and families adapt to chronic illness in a non-linear manner (Samson and Siam 2008). Adapting to genetic test results in the context of rare conditions likely is a similar process. Patients in the rare disease community can turn to social media to not only to seek support but to find information about their diagnosis thus fulfilling their needs as they adapt to their genetic test result (Nicholl 2017). Though there are many positive aspects of online support communities for those with rare disease diagnoses, there are potential drawbacks to using social media, such as finding poor quality information or support, compromising privacy and confidentiality of a child or their family, blurred boundaries for researchers and professionals, and inappropriate or irrelevant conversations due to lack of moderation (Moorhead et al. 2013; von Muhlen & Ohno-Machado 2012).

Concerns about privacy might impact a person’s decisions about how much and with whom to share. There is considerable variability in privacy settings and scope of membership among family-based social media groups. For example, Facebook groups can be open to the public or closed, requiring groups’ designated administrators to approve any requests to join. The target audience for these groups also varies. Some groups specify that the group is intended only to be used as support for parents or individuals with rare diseases, while others allow broader membership by clinicians, researchers, affected individuals, family members, students, teachers, therapists, or any interested individuals.

Moreover, finding people with the same condition who are also struggling with a lack of available information might motivate individuals and families to do more than connect, such as contribute to research (Might 2012). Some patients are using social media to engage with clinicians and researchers. While many rare disease groups are run by parents or individuals with a rare disease, a Facebook group can be created by anyone; it is possible for a Facebook group to be run by an interested researcher or clinician. This scenario can create opportunities for individuals and families to engage with these experts outside of medical appointments. Some individuals with rare disease use social media to connect with researchers to stimulate interest and research activity focused on their specific disorder (Lambertson et al. 2015). Vicari and Cappai (2016) reviewed the partnership model, wherein patients, researchers, and clinicians work together. This collaboration not only allowed patients to share relevant information about their illnesses and experiences but also contributed to overall scientific knowledge. Connections between members of social media groups might contribute to improved understanding of the relationship between genetic variants and disease, provide additional phenotypic information for newly-described genetic conditions, and facilitate effective management of those conditions (Lambertson et al. 2015). Although there may be benefits to these interactions, this engagement outside of the typical professional relationship might also cause complex, ethical, legal, and professional issues including, but not limited to blurring the lines as to when a patient-provider relationship is established, creating questions about practicing medicine in jurisdictions other than where licensed, confidentiality issues, duties to correct misconceptions or pseudoscience, and unintentional endorsements.

Although social media clearly provides access to support, information, and, at times, research opportunities, there is a paucity of literature characterizing the potential for communication, networking, privacy and membership preferences, and support needs for people with rare genetic diagnoses. Here we provide an overview of the preferences among registry participants (1) to inform and encourage more intensive efforts to understand the online behavior, perspectives, and norms of rare disease communities and (2) to provide preliminary guidance to genetic counselors who wish to incorporate a discussion about social media support resources into their clinical practices. This preliminary work could inform the design of more robust and nuanced research of rare disease communities collectively or specific rare disease communities individually.

Methods

Participants

From December 2016 to April 2017, a survey was distributed to 2,524 individuals through two online patient registries, GenomeConnect and the Simons Variation in Individuals Project (Simons VIP). GenomeConnect (www.genomeconnect.org), a web-based patient registry created as part of the NIH-funded Clinical Genome Resource to promote patient-centric data sharing of genotype and phenotype information, is open to anyone who has undergone genetic testing, is considering genetic testing, or is a family member (i.e. parent) of someone who has had testing, regardless of genetic testing results or diagnosis (Kirkpatrick et al., 2015). The majority of GenomeConnect participants have indicated that they or their child underwent genetic testing because they had symptoms of a genetic condition, had a family member with a genetic condition, or their doctor wished to confirm a diagnosis. Simons VIP (www.simonsvipconnect.org) is a web-based patient registry and natural history study that aims to identify and study large numbers of individuals sharing recurrent genetic variants known to increase the risk of developing autism spectrum and other neurodevelopmental disorders (The Simons Vip Consortium 2012).

Procedures

All GenomeConnect participants (n=801) were invited to participate in the survey via an email invitation; a reminder invitation was sent two weeks later. All Simons VIP participants (n=1723) were notified of the opportunity to participate in this survey through newsletters distributed in both December 2016 and February 2017. In addition, Simons VIP posted a link to the survey on the group Facebook page in December 2016 (Figure 1). Responses were collected anonymously, and demographic data were not collected as part of the survey. The survey, designed by the study team, included 13 questions, with a combination of multiple choice, ranking, multiple selection, and free text questions. The number of questions participants received was dependent upon their responses. Participants were first asked two questions to determine (1) if they or a family member had a genetic or rare disease diagnosis or (2) if they or child had undergone genetic testing. To be eligible to participate in this survey, participants needed to answer “yes” to one of those initial questions. Participants were then asked if they use social media in general. Those who reported using social media were asked an additional 10 questions regarding their preferences and participation in rare disease registries for a total of 13 questions. Those who did not use social media (for any reason) were asked two additional questions about why they did not use social media for a total of five questions. Participants were able to skip questions. Statistical analyses were not completed due to low statistical power secondary to a small sample size.

Figure 1.

Figure 1

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Survey Procedures and Responses

Results

A total of 2,524 GenomeConnect and Simons VIP registry participants were notified via email about the survey. Additionally, 1,264 Simons VIP Facebook page followers were reached from the Simons VIP post in December 2016. Some Simons VIP Facebook page followers might not be Simons VIP registry participants, so the number of unique individuals that had access to the survey might have been greater than 2,524. Fifty-percent (n=638) of Simons VIP participants opened either the December or February newsletter. Of these, 15 individuals went on to access the survey. Of the 801 GenomeConnect participants that were contacted, 16 emails were undeliverable (2%). Forty-three percent (43%, n=344) of GenomeConnect participants that were contacted opened either the original survey invitation or reminder. Twelve percent of participants that were emailed (12%, n=96) clicked on the survey link.

A total of 106 responses were received. Using 2,524 as an approximation of the total number of individuals that had access to the survey, the response rate is estimated to be 4%. For context, previous surveys distributed to GenomeConnect participants have had a response rate of 14–20%. The response rate for prior Simons VIP surveys is unknown, as the majority of surveys are targeted for specific genetic diagnoses or symptoms; therefore, no comparable surveys have been administered. Three responses from participants who did not have genetic testing or a genetic diagnosis themselves or family member who had genetic testing a genetic diagnosis were excluded, leaving a total of 103 responses for analysis (Figure 1). Due to item non-response, “N″ does not always equal the total response rate for each survey question.

Just over half of participants (51%, n=53) had genetic testing themselves. Forty-five percent (45%, n=46) of respondents reported genetic testing in a family member, such as a child (45%, n=46). Of those that had genetic testing themselves, 53% (n=28) also had a genetic diagnosis, 25% (n=13) had a family member with a genetic diagnosis, and 23% (n=12) did not have a diagnosis. Of those that were family members of someone who had genetic testing, 85% (n=39) indicated that that family member had a genetic diagnosis. Four respondents (4%) indicated that they and their family members had not had testing but that they had a genetic diagnosis (1%, n=1) or are family members of someone who had such a diagnosis (3%, n=3; Figure 2).

Figure 2.

Figure 2

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Respondent Demographics

Of the 88 respondents that completed the question inquiring about registry participation, 56% (n=58) indicated they were GenomeConnect participants, and 25% (n=26) indicated they were Simons VIP participants. Simons VIP and GenomeConnect registry participants are expected to be over age 18 in order to consent to participate in those registries.

Social Media Platform Use

Of survey respondents, 90% (n=93) reported use of social media in general. Facebook was the most frequently used social media platform (99%, n=88), followed by YouTube (57%, n=51), Pinterest (42%, n=37), Instagram (36%, n=32), and Twitter (33, n=29%; Figure 3). Of the five respondents (5%) who reported that they did not use social media, three (3%) reported being too busy or not interested, one person (1%) cited concerns about privacy for his/her adopted child, and one (1%) was concerned about the accuracy of information on social media.

Figure 3.

Figure 3

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Social Media Platform Use (N=89). (N does not equal the total response rate due to item non-response.)

Social media use from survey data was compared to social media use among those in the general population who are also internet users (Pew Research Center 2016; Figure 4). Because demographic data were not collected, we cannot directly compare the demographics of the study population to the general population data about social media use and preferences.

Figure 4.

Figure 4

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Social Media Use in Study Population Versus General Population Online. Social media use among the general population that use the internet based on Pew Research Data 2016 compared to respondents’ social media use.

Participants who used social media were asked how they used social media in relation to their own or their family member’s diagnosis or genetic testing results. Most participants reported that they looked for information about a diagnosis or test results (83%, n=65), read posts from rare disease groups without making any posts themselves (73%, n=57), participated in conversations about a diagnosis (67%, n=52), shared experiences about testing or a diagnosis (58%), and connected with others to find support (58%, n=45) (Figure 3). Just less than half of participants use social media to communicate with friends or family about a diagnosis (47%, n=37; Figure 5). Several free-text, relevant responses also described that participation in social media rare disease groups allowed participants to obtain information, ask questions, and connect with other stakeholders. For example, one respondent explained that social media afforded her with knowledge about genetic testing options:

Figure 5.

Figure 5

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Participant Activities on Social Media related to their own, or their child’s genetic test results or diagnosis (N=78). (N does not equal the total response rate due to item non-response.)

“I didn’t know what Whole Exome Sequencing was until I joined a Facebook group for kids with hypotonia.”

Another participant explained that social media provided him/her/they with a resource to obtain answers to questions he/she/they felt would have otherwise been unanswered:

“I have found it very helpful and supportive. There are some questions that I could only get answered in this type of forum.”

Finally, one respondent explained how social media enabled genomic discovery and, ultimately, provided his/her/their daughter with a diagnosis:

“Because of the internet, blogs, and social media the disease (NGLY1) was “discovered” and many earlier patients were found which led to a paper being written which ultimately lead to my daughter being diagnosed.”

Facebook allows group access to be either public (i.e., the content is viewable to any Facebook user) or closed (i.e., interested Facebook users must request access to the group). Facebook groups that are closed require that prospective members are approved by a group administrator before they can see posts from group members, comment on the group page, or view a list of group members. Participants were asked if they would be more or less likely to join a closed Facebook support community if researchers were allowed to join. A majority (57%, n=49) were more likely to join such a group, while this would not affect the decision for 33% (n=28) of participants. The remaining 11% (n=8) were less likely to join such a group (Figure 6).

Figure 6.

Figure 6

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Reported likelihood of joining a closed Facebook group that allows researchers to participate (N=85). (N does not equal the total response rate due to item non-response.)

Participants were asked about their comfort with sharing medical questions, photos, or personal information on social media based on group members’ access (Figure 7). Seventy-nine percent (79%) of respondents (n=68) felt somewhat or very comfortable sharing this type of information within private Facebook groups accessible only to parents of or individuals with a particular diagnosis. If the hypothetical group were private but allowed clinician and researcher members in addition to families, this number decreased to 56% (n=48). Only 23% (n=20) of respondents were at least somewhat comfortable sharing medical/personal information on public pages, meaning 60% (n=52) of respondents were somewhat or very uncomfortable sharing medical information, photos, or personal information in an openly accessible (public) Facebook group. One participant elaborated on privacy concerns and the potential misuse of photographs and information:

Figure 7.

Figure 7

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Level of comfort with sharing medical questions, photos, or other personal informaiton on social media (N=86). (N does not equal the total response rate due to item non-response.)

“I think that the privacy of children with rare disease should be more respected and protected. I [often see] that pictures of children [are] shared too often both from parents [and] from organisations. However[,] I understand that parents are proud of their child[, want] to show their “love[,]” and that is important to share some pictures for a better recognition of phenotype from syndromes[.] I think parents and organisations should be more aware about possible misuse of children’s pictures and[,] especially[,] respect the privacy of children who cannot speak for themsel[ves].”

Another participant highlighted perceived potential benefits of broadly sharing information:

“It’s important to share your story with anyone who is willing to listen, you never know who may see it and know someone to may be willing to help or know someone who can!”

Forty-percent (40%) of participants indicated having a clinician, expert, or professional as a moderator of the social media group was important. Thirty-two percent (32%) indicated it was of little or no importance. The remaining 28% of participants were undecided or did not have a preference about inclusion of a moderator (Figure 8).

Figure 8.

Figure 8

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Level of importance for a moderator to be present in or participate in a Facebook group on social media (N=79). (N does not equal the total response rate due to item non-response.)

Discussion

To begin to characterize social media use in the rare disease community and among those that have undergone genetic testing, two online genetics-focused registry cohorts were used to survey participants with genetic or rare disease diagnoses as well as those who have had genetic testing. This sample population, from a sub-set of the population of individuals with rare disease diagnoses or pursuing clinical genetic testing, appeared to use certain social media platforms, including Facebook and Pinterest more frequently than the general population online. This difference, however, might be due to ascertainment biases of this study. In particular, this increased use might merely be an artifact of our recruiting strategy for this survey, which included a post visible to followers of the Simons VIP Facebook page in addition to the direct emails to GenomeConnect and Simons VIP registry participants. Additionally, GenomeConnect and Simons VIP both utilize social media as a recruitment tool. Approximately 5% of GenomeConnect participants and 20% of Simons VIP Connect participants report hearing about these registries through social media platforms. These survey and registry recruitment strategies could skew the sampled population to people who are already using a specific social media platform, such as Facebook. Once individuals are active on one social media platform, entry barriers are likely lower and motivations to join other social media platforms are likely higher than those in the general public.

Facebook was reported as the most widely used social media platform in both this study population and the general population of internet users, but was used by a greater proportion of participants in this study population. We suspect that Facebook was the most widely used resource in part because, having been launched in 2004, it is one of the longest existing social media platforms. Moreover, Facebook is globally-accessible and an easy-to-use social media tool that serves multiple functions for both individual and group communication. In addition, Facebook, unlike other social media tools, does not have restrictions for use, such as character limit (Twitter) or posting of photographs only (Instagram).

General use of Pinterest and Twitter also appeared to be increased in this study population compared to the general population of internet users. Although the general use was increased, we suspect that some individuals and families are using these platforms in relation to their rare disease diagnosis and/or genetic test results. GenomeConnect has a Pinterest page with registry specific and genetics related content that receives approximately forty-nine views each month. Individuals and families have utilized Twitter to find with other families as well as researchers using a gene name or diagnosis as a hashtag to connect. We do suspect that individuals and families are seeking information through social media is a noteworthy finding and might be due to the scarcity of other information and support.

Patients and their families might adapt to genetic information through physical, psychological, social, spiritual, or vocational tasks and might cope with information employing a variety of tasks including seeking information, taking action, goal-setting, minimizing, cognitive processing, and requesting support (Samson and Siam 2008, Djurdjinovic 2011). In this study population, families and individuals reported using social media for tasks that could facilitate their adaptation to their genetic diagnosis or genetic test results. Most participants that utilized social media reported using it in relation to their diagnosis or genetic test results to look for information, share experiences, and connect with others for support. If other rare disease groups or those who have undergone genetic testing utilize social media in a similar manner to this sample population, social media might be a meaningful resource for support and information collection that has not been widely embraced by the genetic counseling and medical community.

The survey data showed broad variability between individuals’ privacy preferences, suggesting that individual preferences are likely unique and specific to a family or individual’s experiences, concerns, and adaptation to their diagnosis or genetic test results. Based on survey responses, the membership criteria of a Facebook group appears to affect the members’ willingness to share. If the group is open to any person on Facebook, then a patient or family might be less likely to share private information. If a group is closed, has specific membership requirements, and has guidelines for posting, patients might be more willing to share. We hypothesize that social media use might be impacted, in part, by coping styles and desire for information, meaning that some families might have different opinions about privacy depending upon their coping strategies and acceptance of a diagnosis as well as stigma associated with the specific disease involved.

Patient personality traits and demographics might influence privacy preferences in social media use (Coventry et al. 2016; Eglelman & Peer 2015; Acquisti & Grossklags 2004; Krasnova, Veltri, & Günther 2012). Individuals’ intentions also likely mitigate privacy concerns and self-disclosure (Barzarova & Choi 2014). Those seeking emotional support from a large community might have less concern about control of information distribution and disclosure versus someone who seeks specific informational support resources.

Survey data show that the majority participants (59%) are in favor of researcher or clinician participation in Facebook groups. We hypothesize that patients see a potential benefit to involving researchers or clinicians in support groups and might adapt and cope with genetic information in different ways. The CanChild Centre for Childhood Research evaluated the success of a private Facebook group designed to connect parents of children with disabilities with researchers. They reported that parents appreciated the sense of community from the group but “wanted more researcher participation” in the group (Russell, et al., 2016). Emerging treatments or clinical trials relevant to rare disease communities are often accessible only through research, and researcher participation might allow patients and their families to remain up to date about interventions or treatment opportunities or advance understanding of disease for the entire medical community. Including researchers and/or clinicians as members of a rare disease group might be seen as an additional opportunity to access to information, medical advice, or research that otherwise might not have been available. Conversely, for the 11% of patients who reported they would be less likely to join a group if researchers were included as members, researcher participation could be seen as unwelcomed surveillance or seen as studying without consent, both of which could foster a reluctance to speak candidly or share broadly. There are both benefits and limitations to including researchers or clinicians in a group conversation, and there is not necessarily a right or wrong answer for inclusion of clinicians or researchers in a group.

Finally, participants were divided in their preferences regarding group moderators. A moderator’s function is to oversee communication within a group, guide conversation, prompt members to participate, and manage hostile and inappropriate interactions. Some participants rated this as important feature (40%), while others viewed a moderator as an unimportant feature of a rare disease group (32%). This indicates that while some families might prefer a more structured support environment, others might not have a preference, and others might feel concerned about monitoring of posts. We suspect that there are many reasons why a participant might not want a moderator involved in a group that were not addressed by this preliminary survey. A moderator might be seen as an outsider or might affect a person’s comfort with speaking openly about negative experiences with healthcare providers or family members. Concerns about judgement or censorship of frustrating and/or difficult decisions might exist as well. These data underscore the need for further research to better understand how patients might react to the presence of a moderator. Genetic counselors identifying social media resources for patients should encourage their patients to think about whether the presence or absence of a group moderator might affect their willingness to engage with and participate in conversation.

Limitations

There are clear and significant limitations with the generalizability of this population to the rare disease community as a whole. This was a limited sample of individuals more likely to have access to the internet. Moreover, the population included a broad range of participants in terms of diagnosis and genetic test results. Online groups were purposefully selected, however, to develop preliminary guidelines about expectations by understanding the preferences of people who might already be actively using social media resources.

Additionally, the small sample size might also limit implications of the survey data; our results might not be representative of other patient registries or individuals in the rare disease community. Therefore, our sample might be significantly biased regarding privacy and social media use given their self-selection to complete the survey. Further studies focusing on social media use in rare disease communities should be powered adequately to uncover additional differences and trends. Our study also draws from self-reported social media use, and, therefore, participants’ responses might also be subject to self-report biases. Additional research among other rare disease groups and those that have undergone genetic testing is needed.

Practice Implications

While our data are limited, they provide a starting point for a broader conversation in the genetic counseling profession. If patients are using social media for information and support, how can we best guide them to appropriate resources that fit their preferences and desire to access information and support online?

Individuals affected by a rare disease or who have undergone genetic testing are using social media to connect and obtain information. They wish to have some control over the visibility of the information they share and likely have distinct preferences regarding group membership. Genetic counselors are well-suited to evaluate their patients’ adaptations to a genetic diagnosis and/or genetic test results, examine their preferences for information and support, and provide them with resources consistent with their values and needs. With social media, and Facebook in particular, being frequently utilized resources for these individuals both anecdotally and as indicated by this survey, genetic counselors can provide patients with anticipatory guidance when accessing social media platforms for information and support.

  1. Explore support needs and highlight social media if appropriate.

    Genetic counselors are well suited to discuss support needs and regularly incorporate this into their practice. As part of this discussion, genetic counselors should consider identifying online information and social media resources as appropriate. When information about a new diagnosis or rare disease is limited, social media resources can be helpful for immediate access to information and support.

  2. Incorporate guidance about the potential limitation of social media resources into support discussion.

    When providing information about social media resources, genetic counselors should also provide patients with guidance about reliable resources for information and for support and can play a role in minimizing the provision of misinformation (von Muhlen & Ohno-Machado, 2012).

  3. Provide anticipatory guidance about privacy differences among social media groups.

    Facebook groups can be open to the public or closed with specific membership requirements determined by the group’s administrator. Is your patient an information seeker, or is she/he/they looking for a support community? Explain the differences between public and closed groups, and encourage your patients to identify the group’s administrator (organizer) to determine the membership structure, whether posts are moderated, and size of the group. Explore your patient’s preferences about privacy and suggest they contact the group’s administrator about membership restrictions prior to requesting to join if they have concerns.

Research Recommendations

In order to develop more generalizable counseling points for genetic counselors interacting with patients exploring online support groups, more detailed studies about social media use, online support needs, interests, motivations, and privacy preferences as well as the demographics and characteristics that influence these goals and preferences, are critical. In this era when patients are using the internet to access information, we recognize that there are many more questions left unanswered about the use of social media. Further research to answer questions about ethical considerations, provider concerns, and membership support preferences would help address the needs of patients and their family members.

Acknowledgements:

Unique: The Rare Chromosome Disorder Support Group (Beverly Searle).

Funding: ClinGen is funded through the following grants & contracts: 1U41HG006834, 1U01HG007437, 1U01HG007436, HHSN261200800001E. Simons VIP is funded by the Simons Foundation.

Appendix A

  1. Have you, or someone in your family, had genetic testing?
    1. Yes, I have had genetic testing
    2. Yes, a family member has had genetic testing
    3. No
  2. Do you, or does someone in your family, have a genetic diagnosis?
    1. Yes, I have a genetic diagnosis
    2. Yes, a family member has a diagnosis
    3. No
  3. Do you use Facebook or other social media?
    1. Yes
    2. No
  4. Are you aware that there are rare disease groups on Facebook?
    1. Yes
    2. No
  5. Check social media outlets that you use (select all that apply)
    1. Facebook
    2. Pinterest
    3. YouTube
    4. Twitter
    5. Instagram
    6. Reddit
    7. SnapChat
    8. Blogs
    9. Other (please specify)
  6. Have you ever used social media for any of the following purposes? (select all that apply)
    1. I read posts from a rare disease group or organization without making any posts myself
    2. I participate in conversations about my/my child’s diagnosis in a Facebook group
    3. I look for new information about my/my child’s diagnosis
    4. I connect with other families and find support through a group
    5. I keep my friends and family up-to-date about my/my child’s diagnosis
    6. I share my experience about genetic testing or about my/my child’s diagnosis
    7. Other (please specify)
  7. If you participate in any CLOSED Facebook groups, rank how important it is that the group is moderated by a clinician, expert, or professional: (Note: closed groups are Facebook groups that you must request and be approved to join)
    1. Not at all important
    2. A little important
    3. Undecided or Neutral
    4. Somewhat important
    5. Very important
  8. Would you be more or less likely to join a support community through Facebook if it was OPEN to researchers?
    1. I would be more likely to join a group if the group was open to researchers
    2. I would be less likely to join a group if the group was open to researchers
    3. Whether a group is open to researchers does not affect my decision
  9. Rank your level of comfort with sharing medical questions, photos, and other personal information on Facebook or other social media.
    1. Very uncomfortable
    2. A little uncomfortable
    3. Undecided or neutral
    4. Somewhat comfortable
    5. Very comfortable
  10. Rank your level of comfort with sharing medical questions, photos, and other personal information on Facebook or other social media.
    1. Personal Safety
      1. Not concerned at all
      2. A little concerned
      3. Neutral
      4. Somewhat concerned
      5. Extremely concerned
    2. Data Security
      1. Not concerned at all
      2. A little concerned
      3. Neutral
      4. Somewhat concerned
      5. Extremely concerned
  11. Do you have any thoughts, comments, or concerns to share with us about your use of social media, as it relates to a genetic diagnosis or genetic testing experience?
    1. Free text response
  12. Do you have any suggestions for rare disease groups on Facebook?
    1. Free text response
  13. If you do not use social media, please explain why.
    1. Free text response
  14. Are you registered with any patient registries? (please select any that apply)
    1. GenomeConnect
    2. Simons VIP Connect
    3. Unique
    4. Unsure
    5. Prefer Not To Answer
    6. Other

Footnotes

Ethical approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This study was approved for expedited review.

Conflict of Interest: The authors declare that they have no conflict of interest.

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