Journal of Genetic Counseling

, Volume 18, Issue 2, pp 119–129 | Cite as

How Parents Search, Interpret, and Evaluate Genetic Information Obtained from the Internet

  • Myra I. Roche
  • Debra Skinner
Original Research


This study describes how parents of a child referred for genetic services searched the Internet for information, summarizes how they interpreted and evaluated the information they obtained, and identifies barriers that they encountered. Audio-taped interviews were conducted with 100 ethnically diverse families referred to a pediatric genetics clinic. After transcription, coded text was entered into a software program (QSR N6) for searching and data retrieval. Matrices were created to systematically categorize and compare families’ Internet use. Eighty-three percent of families obtained Internet information about the diagnosis, the clinic visit, and/or treatment and services. Those not conducting searches lacked access, Internet experience, or a diagnostic term and had lower incomes and less education, regardless of ethnicity. Families sought information in preparation for the clinic visit but barriers to obtaining and interpreting relevant information were common. Parents’ Internet searching experiences illustrate common barriers to obtaining and understanding genetic information. Identifying them can help genetic counselors facilitate parents’ searches for relevant information.


Genetic counseling Genetic services Health knowledge Attitudes Parents Practice Internet Consumer health information Health literacy Qualitative research 



The Culture and Family Interpretations of Genetic Disorder Project (1 R01 HG02164—Debra Skinner, PI), which provided the ethnographic data for this article, was funded by the Ethical, Legal and Social Implications (ELSI) Research Program of NIH/NHGRI.

The authors would like to thank Kristie Kuczynski and Rebecca Schaffer for their contributions to the analysis.


  1. Aslam, N., Bowyer, D., Wainwright, A., Theologis, T., & Benson, M. (2005). Evaluation of Internet use by paediatric orthopaedic outpatients and the quality of information available. Journal of Pediatric Orthopaedics. Part B, 14(2), 129–133.Google Scholar
  2. Bailey, D., & Powell, T. (2005). Assessing the information needs of families in early intervention. In M. J. Guralnick (Ed.), A developmental systems approach to early intervention (pp. 151–183). Baltimore: Paul Brookes.Google Scholar
  3. Bansil, P., Keenan, N., Zlot, A., & Gilliand, J. (2006). Health-related information on the Web: results from the HealthStyles Survey, 2002–3. Preventing Chronic Disease, 3(2), 1–10.Google Scholar
  4. Berland, G., Elliott, M., Morales, L., Algazy, J., Kravitz, R., Broder, M., et al. (2007). Health information on the Internet: Accessibility, quality, and readability in English and Spanish. Journal of the American Medical Association, 285(20), 2612–2621. doi: 10.1001/jama.285.20.2612.CrossRefGoogle Scholar
  5. Brunger, J. W., Murray, G. S., O’Riordan, M., Mathews, A. L., Smith, R. J. H., & Robin, N. H. (2000). Parental attitudes toward genetic testing for pediatric deafness. American Journal of Human Genetics, 67(6), 1621–1625. doi: 10.1086/316901.PubMedCrossRefGoogle Scholar
  6. Chapple, A., May, C., & Campion, P. (1995). Lay understanding of genetic disease: A British study of families attending a genetic counseling service. Journal of Genetic Counseling, 4(4), 281–301. doi: 10.1007/BF01408074.PubMedCrossRefGoogle Scholar
  7. Christian, S., Kieffer, S. A., & Leonard, N. J. (2001). Medical genetics and patient use of the Internet. Clinical Genetics, 60(3), 232–236. doi: 10.1034/j.1399-0004.2001.600310.x.PubMedCrossRefGoogle Scholar
  8. Collins, V., Halliday, J., Kahler, S., & Williamson, R. (2001). Parents’ experiences with genetic counseling after the birth of a baby with a genetic disorder: An explanatory study. Journal of Genetic Counseling, 10(1), 53–72. doi: 10.1023/A:1009455413944.CrossRefGoogle Scholar
  9. Denzin, N. K. (1989). The research act: A theoretical introduction to sociological method (3rd ed.). Englewood Cliffs: N.J.L. Prentice Hall.Google Scholar
  10. Dhillon, A., Albersheim, S., Alsaad, S., Pargass, N., & Zupancic, J. (2003). Internet use and perceptions of information reliability by parents in a neonatal intensive care unit. Journal of Perinatology, 23, 420–424. doi: 10.1038/ Scholar
  11. Diaz, J., Griffith, R., Ng, J., Reinert, S., Freidman, P., & Moulton, A. (2002). Patients’ use of the Internet for medical information. Journal of General Internal Medicine, 17(3), 180–185. doi: 10.1046/j.1525-1497.2002.10603.x.PubMedCrossRefGoogle Scholar
  12. Giardiello, F. M., Brensinger, J. D., Petersen, G. M., Luce, M. C., Hylind, L. M., Bacon, J. A., et al. (1997). The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. The New England Journal of Medicine, 336(12), 823–827. doi: 10.1056/NEJM199703203361202.PubMedCrossRefGoogle Scholar
  13. Goetz, J. P., & LeCompte, M. D. (1981). Ethnographic research and the problem of data reduction. Anthropology & Education Quarterly, 12, 51–70. doi: 10.1525/aeq.1981.12.1.05x1283i.CrossRefGoogle Scholar
  14. Green, M. J., Biesecker, B. B., McInerney, A. M., Mauger, D., & Fost, N. (2001). An interactive computer program can effectively educate patients about genetic testing for breast cancer susceptibility. American Journal of Medical Genetics, 103(1), 16–23. doi: 10.1002/ajmg.1500.PubMedCrossRefGoogle Scholar
  15. Hallowell, N., Murton, F., Statham, H., Green, J. M., & Richards, M. P. M. (1997). Women’s need for information before attending genetic counseling for familial breast or ovarian cancer: A questionnaire, interview, and observational study. British Medical Journal, 314(7076), 281–283.PubMedGoogle Scholar
  16. Hart, A., Henwood, F., & Wyatt, S. (2004). The role of the Internet in patient-practitioner relationships: Findings from a qualitative research study. Journal of Medical Internet Research, 6(3), e36. doi: 10.2196/jmir.6.3.e36.PubMedCrossRefGoogle Scholar
  17. Hummelinck, A., & Pollock, K. (2006). Parents’ information needs about the treatment of their chronically ill child: A qualitative study. Patient Education and Counseling, 62, 228–234. doi: 10.1016/j.pec.2005.07.006.PubMedCrossRefGoogle Scholar
  18. Ikemba, C., Kozinetz, C., Feltes, T., Fraser, C., McKenzie, E. D., Shah, N., et al. (2002). Internet use in families with children requiring cardiac surgery for congenital heart disease. Pediatrics, 109(3), 419–422. doi: 10.1542/peds.109.3.419.PubMedCrossRefGoogle Scholar
  19. Lewis, C. C., Pantell, R. H., & Sharp, L. (1991). Increasing patient knowledge, satisfaction, and involvement: Randomized trial of a communication intervention. Pediatrics, 88(2), 351–358.PubMedGoogle Scholar
  20. Madden, M., & Fox, S. (2006). Finding answers on-line in sickness and in health. Pew Internet & American Life Project. Retrieved September, 19, 2008, from
  21. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis (2nd ed.). Thousand Oaks: Sage.Google Scholar
  22. Murray, E., Lo, B., Pollack, L., Donelan, K., Catania, J., White, M., et al. (2003). The impact of health information on the Internet on the physician–patient relationship. Archives of Internal Medicine, 163, 1727–1734. doi: 10.1001/archinte.163.14.1727.PubMedCrossRefGoogle Scholar
  23. Noll, S., Spitz, L., & Pierro, A. (2001). Additional medical information: Prevalence, source, and benefit to parents. Journal of Pediatric Surgery, 36(5), 791–794. doi: 10.1053/jpsu.2001.22962.PubMedCrossRefGoogle Scholar
  24. Pain, H. (1999). Coping with a child with disabilities from the parents’ perspective: The function of information. Child: Care, Health and Development, 25(4), 299–312. doi: 10.1046/j.1365-2214.1999.00132.x.CrossRefGoogle Scholar
  25. Patton, M. (2002). Qualitative evaluation and research methods (3rd ed.). Thousand Oaks: Sage.Google Scholar
  26. Perrin, E., Lewkowicz, C., & Young, M. H. (2000). Shared vision: Concordance among fathers, mothers, and pediatricians about unmet needs of children with chronic health conditions. Pediatrics, 105(1), 277–285.PubMedGoogle Scholar
  27. Rahi, J. S., Manaras, I., & Barr, K. (2003). Information sources and their use by parents of children with ophthalmic disorders. Investigative Ophthalmology & Visual Science, 44(6), 2457–2460. doi: 10.1167/iovs.02-1184.CrossRefGoogle Scholar
  28. Rice, R. (2006). Influences, usage, and outcomes of Internet health information searching: Multivariate results from the Pew surveys. International Journal of Medical Informatics, 75, 8–28. doi: 10.1016/j.ijmedinf.2005.07.032.PubMedCrossRefGoogle Scholar
  29. Roche, M. (2006). Genetic counseling considerations in molecular diagnosis. In W. B. Coleman & G. Tsongalis (Eds.), Molecular diagnostics for the clinical laboratorian (pp. 525–544). Totowa: Humana Press.Google Scholar
  30. Schaffer, R., Kuczynski, K., & Skinner, D. (2008). Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health & Illness, 30, 145–159.CrossRefGoogle Scholar
  31. Schwartz, K., Roe, T., Northrup, J., Meza, J., Seifeldin, R., & Neale, A. J. (2006). Family Medicine patients’ use of the Internet for health information: A MetroNet Study. Journal of the American Board of Family Medicine, 19(1), 39–45.PubMedCrossRefGoogle Scholar
  32. Sikkens, E., de Walle, H., Reefhuis, J., Tintelen, J., & van Essen, A. (2002). Referral for genetic counseling after the birth of a child with a congenital anomaly in the northern Netherlands. American Journal of Medical Genetics, 112(2), 133–137. doi: 10.1002/ajmg.10680.PubMedCrossRefGoogle Scholar
  33. Sillence, E., Briggs, P., Harris, P., & Fishwick, L. (2007). How do patients evaluate and make use of online health information? Social Science & Medicine, 64, 1853–1862. doi: 10.1016/j.socscimed.2007.01.012.CrossRefGoogle Scholar
  34. Skinner, D., & Schaffer, R. (2006). Families and genetic diagnoses in the genomic and Internet age. Infants and Young Children, 19(1), 16–24.CrossRefGoogle Scholar
  35. Skiraton, H. (2006). Parental experience of a pediatric genetic referral. MCN. The American Journal of Maternal Child Nursing, 31(3), 178–184. doi: 10.1097/00005721-200605000-00010.CrossRefGoogle Scholar
  36. Stark, M., & Moller, A. (2002). Parents’ needs for knowledge concerning the medical diagnosis of their children. Journal of Child Health Care, 6(4), 245–257.CrossRefGoogle Scholar
  37. Strauss, R., Sharp, M., Lorch, C., & Kachalia, B. (1995). Physicians and the communication of “bad news”: Parent experiences of being informed of their child’s cleft lip and/or palate. Pediatrics, 96(1 Pt 1), 82–89.PubMedGoogle Scholar
  38. Taanila, A., Jarvelin, M. -R., & Kokkonen, J. (1998). Parental guidance and counseling by doctors and nursing staff: Parents’ views of initial information and advice for families with disabled children. Journal of Clinical Nursing, 7, 505–511. doi: 10.1046/j.1365-2702.1998.00190.x.PubMedCrossRefGoogle Scholar
  39. Taylor, M., Alman, A., & Manchester, D. (2001). Use of the Internet by patients and their families to obtain genetics-related information. Mayo Clinic Proceedings, 76, 772–776.PubMedCrossRefGoogle Scholar
  40. Tuffrey, C., & Finlay, F. (2002). Use of the Internet by parents of paediatric outpatients. Archives of Disease in Childhood, 87, 534–536. doi: 10.1136/adc.87.6.534.PubMedCrossRefGoogle Scholar
  41. Wainstein, B., Sterling-Levis, K., Baker, S., Taitz, J., & Brydon, M. (2006). Use of the internet by parents of paediatric patients. Journal of Paediatrics and Child Health, 42, 528–532. doi: 10.1111/j.1440-1754.2006.00916.x.PubMedCrossRefGoogle Scholar
  42. Westman, J., Hampel, H., & Bradley, T. (2000). Efficacy of a touchscreen computer based family cancer history questionnaire and subsequent cancer risk assessment. American Journal of Medical Genetics, 37(5), 354–360. doi: 10.1136/jmg.37.5.354.CrossRefGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2008

Authors and Affiliations

  1. 1.Department of PediatricsUniversity of North Carolina at Chapel HillChapel HillUSA
  2. 2.FPG Child Development InstituteUniversity of North Carolina at Chapel HillChapel HillUSA
  3. 3.Medical School Wing E, Division of Genetics and Metabolism, CB #7487UNC-CHChapel HillUSA

Personalised recommendations