Incorporating Social Media into your Support Tool Box: Points to Consider from Genetics‐Based Communities
Open accessAbstract
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 2524 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.
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Parents and patients access information online similarly, with online support groups as most common mechanism and Facebook as most common platform in both cohorts.
“The ways in which parents and patients access information online are very similar, with online support groups serving as the most common mechanism and Facebook being the most common platform in both cohorts.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [33]
The Results (‘Social Media Platform Use’; page not available) identify Facebook as the most frequently used platform among survey respondents. The paper also reports use of rare-disease groups for information and support, but does not establish that online support groups were the most common way to access information or compare those patterns separately for parents and patients. (LLM, conf=0.84)
Experimental — accuracy not yet measuredSome rare diseases are diagnosed in adulthood, and diagnosis was an initiating factor in seeking online support and information in these patients, similar to caregivers.
“However, some rare diseases are diagnosed in adulthood, and diagnosis was highlighted as an initiating factor in seeking online support and information in these patients, similarly to the pattern seen in caregivers [33,34].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [33]
The Results (Social Media Platform Use; page not provided) show that respondents used social media to seek information about a diagnosis or test result and to connect with others for support. The Results also include people reporting their own genetic diagnoses and family members reporting diagnoses, but do not establish that the patients were diagnosed in adulthood or that diagnosis initiated their online search. (LLM, conf=0.84)
Experimental — accuracy not yet measuredPatients search for other people with similar conditions to connect with and want to feel part of a community.
“Patients search for other people with similar conditions to connect with and want to feel part of a community [31-35].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [33]
The Abstract and Results (Social Media Platform Use; page unavailable) report that participants with rare genetic findings used social media to connect with others for support. The paper does not establish that patients generally want to feel part of a community; its findings concern a specific genetics-focused sample. (LLM, conf=0.82)
Experimental — accuracy not yet measuredThree excluded studies focused on use of social media support groups by patients with rare diseases.
“Similarly, 3 excluded studies [31-33] focused on the use of social media support groups by patients with rare diseases.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [33]
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- Authors
- Rocha, H. M., Savatt, J. M., Riggs, E. R., Wagner, J. K., Faucett, W. A., & Martin, C. L.
- Affiliations
- Genomic Medicine Institute, Geisinger 100 N Academy Ave, MC 26‐20 Danville PA 17822 USA
- Autism & Developmental Medicine Institute (US)
- Center for Translational Bioethics & Health Care Policy, Geisinger Danville PA USA
- Corresponding author
- Rocha, Heather Mae
- ORCID
- Venue
- Journal of Genetic Counseling
- Publisher
- Wiley
- Published
- 2017-11-13
- Volume
- 27
- Issue
- 2
- Pages
- 470-480
- ISSN
- 1059-7700 (ISSN-L)
- 1573-3599
- PMC
- PMC8340936
- OpenAlex
- W2767909520
- Cited by
- 38
- References
- 28
- Citations by year
- 2026: 1 · 2025: 4 · 2024: 6 · 2023: 4 · 2022: 3 · 2021: 6 · 2020: 8 · 2019: 3 · 2018: 3
- FWCI
- 4.26
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Genetic Counseling (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Human Genome Research Institute (1U41HG006834-01A1, U01 HG007437-01, U01 HG007436-01)
- National Cancer Institute (HHSN261200800001E)
- Simons Foundation
- Topics
- Social Sciences › Health › Social Media in Health Education
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genomics and Rare Diseases
- Keywords
- social media, patient support, genetic counseling, privacy preferences, Facebook groups, patient registry, anticipatory guidance, online communities, information seeking
- MeSH terms
- Female, Genetic Counseling, Humans, Male, Surveys and Questionnaires, Social Support, Social Media
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