“Before Facebook and before social media…we did not know anybody else that had this”: parent perspectives on internet and social media use during the pediatric clinical genetic testing process

  • Krysta S. Barton
  • Andrew Wingerson
  • Julie R. Barzilay
  • Holly K. TaborEmail author
Original Article


Parents of children who undergo clinical genetic testing have significant informational and emotional support needs at different stages of the testing process. We analyzed parent views about use of both the internet and social media to help meet these needs. We interviewed 20 parents of children who underwent clinical genetic testing and analyzed transcripts to identify themes related to internet and social media use. Parents described using the internet to search for information at three stages of the genetic testing process: before testing, pending results return, and after results return. Each stage corresponded to different information vacuums and needs. Parents also described using condition-specific Facebook groups to learn more about their child’s condition and to find support networks of families with similar experiences in ways that were challenging using non-social media approaches. Both the internet and social media play important roles in meeting informational and support needs in pediatric genetic testing, especially for rare conditions. Providers should consider engaging parents at different stages of the testing process about their use of the internet and social media, and consider directing them to vetted sites and groups as part of shared decision making and to improve satisfaction and outcomes.


Genetic testing Internet Social media Diagnostic odyssey 



We would like to thank the parents who shared their experiences and perspectives with us. We would also like to thank the advocacy organizations and researchers who helped us with recruitment.

Funding information

Research reported on in this publication was supported by a pilot grant from the Center for Clinical and Translational Research at Seattle Children’s Research Institute.

Compliance with ethical standards

This study was approved by Seattle Children’s Hospital Institutional Review Board.

Conflict of interest

The authors declare that they have no conflict of interest.

Human studies and informed consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all individual participants included in the study.


  1. Abedin T, Al Mamun M, Lasker MA, Ahmed SW, Shommu N, Rumana N, Turin TC (2017) Social media as a platform for information about foot care: a study of Facebook groups. Can J Diabetes 41:97–101CrossRefGoogle Scholar
  2. Al Mamun M, Imbrahim HM, Turin TC (2015) Social media in communicating health information: an analysis of Facebook groups related to hypertension. Prev Chronic Dis 12:E11CrossRefGoogle Scholar
  3. Alotaibi NM, Samuel N, Wang J, Ahuja CS, Gupta D, Ibrahim GM, Schweizer TA, Saposnik G, Macdonald RL (2017) The use of social media communications in brain aneurysms and subarachnoid hemorrhage: a mixed-methods analysis. World Neurosurg 98:456–462CrossRefGoogle Scholar
  4. Athanasopoulou C, Välimäki M, Koutra K, Löttyniemi E, Bertsias A, Basta M, Vgontzas AN, Lionis C (2017) Internet use, eHealth literacy and attitudes toward computer/internet among people with schizophrenia spectrum disorders: a cross-sectional study in two distant European regions. BMC Med Inform Decis Mak 17:136CrossRefGoogle Scholar
  5. Attride-Stirling J (2001) Thematic networks: an analytic tool for qualitative research. Qual Res 1:385–405CrossRefGoogle Scholar
  6. Bender JL, Jimenez-Marroquin MC, Jadad AR (2011) Seeking support on Facebook: a content analysis of breast cancer groups. J Med Internet Res 13:e16CrossRefGoogle Scholar
  7. Choudhury M, Dinger Z, Fichera E (2017) The utilization of social media in the hearing aid community. Am J Audiol 26(1):1–9CrossRefGoogle Scholar
  8. DeLuca JM, Kearey MH, Norton SA, Arnold GL (2012) Internet use by parents of infants with positive newborn screens. J Inherit Metab Dis 35:879–884CrossRefGoogle Scholar
  9. Domonoske C (2018) Facebook says security breach affected almost 50 million accounts. NPR. Accessed 14 October 2018
  10. Elkarim GA, Alotaibi NM, Samuel N, Wang S, Ibrahim GM, Fallah A, Weil AG, Kulkarni AV (2012) Social media networking in pediatric hydrocephalus: a point-prevalence analysis of utilization. J Neurosurg Pediatr 20:119–124Google Scholar
  11. Gunderson T (2011) ‘One wants to know what a chromosome is’: the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder. Sociol Health Illness 33:81–95CrossRefGoogle Scholar
  12. Harmon A (2007) After DNA diagnosis: ‘Hello, 16p11.2. Are you just like me?’ Retrieved from: Accessed 14 October 2018
  13. Hassler C (2017) Here’s why Facebook groups could really change the world—with a little help from Sheryl Sandberg. Retrieved from: Accessed 14 October 2018
  14. Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15:1277–1288CrossRefGoogle Scholar
  15. Jacobs R, Boyd L, Brennan K, Sinha CK, Giuliani S (2016) The importance of social media for patients and families affected by congenital anomalies: a Facebook cross-sectional analysis and user survey. J Pediatr Surg 51:1766–1771CrossRefGoogle Scholar
  16. Joseph G, Pasick RJ, Schillinger D, Luce J, Guerra C, Ka Yan Cheng J (2017) Information mismatch: cancer risk counseling with diverse underserved patients. J Genet Couns Advanced online publication 26:1090–1104.
  17. Khouri JS, McChevne MJ, Morrison CS (2017) #Cleft: the use of social media amongst parents of infants with clefts. Cleft Palate Craniofac J 55:974–976. CrossRefGoogle Scholar
  18. Lewis C, Skirton H, Jones R (2010) Living without a diagnosis: the parental experience. Genet Test Mol Biomark 14:807–815CrossRefGoogle Scholar
  19. Nicholl H, Tracey C, Begley T, King C, Lynch AM (2017) Internet use by parents of children with rare conditions: findings from a study on parents’ web information needs. J Med Internet Res 19:e51CrossRefGoogle Scholar
  20. Pelentsov LJ, Laws TA, Esterman AJ (2015) The supportive care needs of parents caring for a child with a rare disease: a scoping review. Disabil Health J 8:475–491CrossRefGoogle Scholar
  21. Pew Research Center (Greenwood, Perin, Duggan). Social Media Update 2016.
  22. Roche MI, Skinner D (2009) How parents search, interpret and evaluate genetic information obtained from the internet. J Genet Couns 18:119–129CrossRefGoogle Scholar
  23. Roose K (2017) Behind the velvet ropes of Facebook’s private groups. Retrieved from: Accessed 14 October 2018
  24. Rosenthal ET, Biesecker LG, Biesecker BB (2001) Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes. Am J Med Genet 103:106–114CrossRefGoogle Scholar
  25. Saxena RC, Lehmann AE, Hight AE, Darrow K, Remenschneider A, Kozin ED, Lee DJ (2015) Social media utilization in the cochlear implant community. J Am Acad Audiol 26:197–204CrossRefGoogle Scholar
  26. Schaffer R, Kuczynski K, Skinner D (2008) Producing genetic knowledge and citizenship through the Internet: mothers, pediatric genetics and cybermedicine. Sociol Health Illn 30:145–159Google Scholar
  27. Skinner D, Schaffer R (2006) Families and genetic diagnoses in the genomic and internet age. Infants Young Child 19:16–24CrossRefGoogle Scholar
  28. Smith A (2015) Chapter one: a portrait of smartphone ownership. U.S. smartphone use in 2015..
  29. Thoren EM, Metze B, Bührer C, Garten L (2013) Online support for parents of preterm infants: a qualitative and content analysis of Facebook ‘preemie’ groups. Arch Dis Child Fetal Neonatal Ed 98:F534–F538CrossRefGoogle Scholar
  30. Wren I (2018) Still on Facebook, but worried. NPR. Accessed 14 October 2018
  31. Yanes T, Humphreys L, McInerney-Leo A, Biesecker B (2016) Factors associated with parental adaptation to children with an undiagnosed medical condition. J Genet Counsel Advanced online publication 26:829–840. CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Treuman Katz Center for Pediatric BioethicsSeattle Children’s Research InstituteSeattleUSA
  2. 2.Keck School of Medicine of the University of Southern CaliforniaLos AngelesUSA
  3. 3.Stanford University School of MedicineStanfordUSA
  4. 4.Stanford Center for Biomedical EthicsStanford University School of MedicineStanfordUSA

Personalised recommendations