Advertisement

Journal of Genetic Counseling

, Volume 25, Issue 2, pp 314–324 | Cite as

Patients’ Attitudes Towards Disclosure of Genetic Test Results to Family Members: The Impact of Patients’ Sociodemographic Background and Counseling Experience

  • Roy GilbarEmail author
  • Stavit Shalev
  • Ronen Spiegel
  • Elon Pras
  • Michal Berkenstadt
  • Michal Sagi
  • Adi Ben-Yehuda
  • Pnina Mor
  • Shlomit Perry
  • Tzipora Falik Zaccai
  • Zvi Borochowitz
  • Sivia Barnoy
Original Research

Abstract

Many factors predict the intention to disclose genetic information to relatives. The article examines the impact of patients’ socio-demographic factors on their intention to disclose genetic testing results to their relatives. Data were collected in eight genetic clinics in Israel. Patients were requested to fill in a questionnaire after counseling. A convenience sample of 564 participants who visited these clinics was collected for a response rate of 85 %. Of them, 282 participants came for susceptibility testing for hereditary cancers (cancer group), and 282 for genetic screening tests (prenatal group). In the cancer group, being secular and having more years of education correlated positively with the intention to disclose test results to relatives. In the prenatal group, being married and female correlated positively with the intention to disclose. In the cancer group, being religious and with less years of education correlated positively with the view that the clinician should deliver the results to the family. In the prenatal group, being male and unmarried correlated positively with this belief. In both groups, being of young age correlated with the perception that genetic information is private. Varied sociodemographic factors affect the intention to inform family members. Thus, knowing the social background of patients will shed light on people’s attitudes to genetic information and will help clinicians provide effective counseling in discussions with patients about the implications of test results for relatives.

Keywords

Genetic information Disclosure Relatives Israel Family 

Notes

Funding

The study was funded by the Israel Cancer Association and the International Society of Nurses in Genetics.

Conflict of Interest

The authors declare that they have no conflict of interest.

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.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

Supplementary material

10897_2015_9873_MOESM1_ESM.doc (54 kb)
Supplementary Table 1 (DOC 53 kb)

References

  1. Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50(2), 179–211.CrossRefGoogle Scholar
  2. Barsevick, A. M., Montgomery, S. V., Ruth, K., Ross, E. A., Egleston, B. L., Bingler, R., et al. (2008). Intention to communicate BRCA1/BRCA2 genetic test results to the family. Journal of Family Psychology, 22(2), 303–312.PubMedCrossRefGoogle Scholar
  3. Cheung, E. L., Olson, A. D., Yu, T. M., Han, P. Z., & Beattie, M. S. (2010). Communication of BRCA results and family testing in 1,103 high-risk women. Cancer Epidemiology, Biomarkers & Prevention, 19(9), 2211–2219.CrossRefGoogle Scholar
  4. Claes, E., Denayer, L., Evers-Kiebooms, G., Boogaerts, A., & Legius, E. (2004). Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Education and Counseling, 55(2), 265–274.PubMedCrossRefGoogle Scholar
  5. Clarke, A., Richards, M., Kerzin-Storrar, L., Halliday, J., Young, M. A., Simpson, S. A., et al. (2005). Genetic professionals’ reports of nondisclosure of genetic risk information within families. European Journal of Human Genetics, 13(5), 556–562.PubMedCrossRefGoogle Scholar
  6. d’Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15(3), 231–247.PubMedPubMedCentralCrossRefGoogle Scholar
  7. Daly, M. (2009). The impact of social roles on the experience of men in BRCA1/2 families: implications for counseling. Journal of Genetic Counseling, 18(1), 42–48.PubMedCrossRefGoogle Scholar
  8. Dancyger, C., Wiseman, M., Jacobs, C., Smith, J. A., Wallace, M., & Michie, S. (2011). Communicating BRCA1/2 genetic test results within the family: a qualitative analysis. Psychology and Health, 26(8), 1018–1035.PubMedCrossRefGoogle Scholar
  9. Gabai-Kaparaa, E., Lahad, A., Kaufman, B., Friedman, E., Segev, S., Renbaum, P., et al. (2014). Population-based screening for breast and ovarian cancer risk due to BRCA1 and BRCA2. PNAS, 111(39), 14205–14210.CrossRefGoogle Scholar
  10. Gaff, C., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive genetic testing: probands’ perceptions. Journal of Genetic Counseling, 14(2), 133–139.PubMedPubMedCentralCrossRefGoogle Scholar
  11. Gaff, C., Clarke, A., Atkinson, P., Sivell, S., Elwyn, G., Iredale, R., et al. (2007). Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics, 15(10), 999–1011.CrossRefGoogle Scholar
  12. Gilbar, R., & Barnoy, S. (2012). Disclosure of genetic information to relatives in Israel: between privacy and moral responsibility. New Genetics & Society, 31(4), 391–407.CrossRefGoogle Scholar
  13. Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67(6), 492–502.PubMedCrossRefGoogle Scholar
  14. Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2006). Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health & Illness, 28(7), 969–988.CrossRefGoogle Scholar
  15. Hashiloni-Dolev, Y. (2006). Between mothers, foetuses and society: Reproductive genetics in the Israeli Jewish context. Nashim: A Journal of Jewish Women’s Studies and Gender Issues, 12(fall), 129–150.Google Scholar
  16. Hay, J., Shuck, E., Brady, M. S., Berwick, M., Ostroff, J., & Halpern, A. (2008). Family communication after melanoma diagnosis. Archives of Dermatology, 144(4), 553–554.PubMedPubMedCentralCrossRefGoogle Scholar
  17. Helman, C. (2007). Culture, health and illness. London: Hodder Arnold.CrossRefGoogle Scholar
  18. Israel Central Bureau of Statistics, demographic data (2012). https://doi.org/www.cbs.gov.il/publications13/seker_hevrati11/pdf/intro_h.pdf. Accessed 16/2/2015.
  19. Jewish Genetics (2015). https://doi.org/www.jewishgenetics.org/dor-yeshorim. Accessed 16/2/2015.
  20. Keenan, K. F., Simpson, S. A., Wilson, B. J. V., Teijlingen, E. R., Mckee, L., Haites, N., et al. (2005). ‘It’s their blood not mine’: who’s responsible for (not) telling relatives about genetic risk? Health. Risk & Society, 7(3), 209–226.CrossRefGoogle Scholar
  21. Kegelaers, D., Merckx, W., Odeurs, P., van den Ende, J., & Blaumeiser, B. (2014). Disclosure pattern and follow-up after the molecular diagnosis of BRCA/CHEK2 mutations. Journal of Genetic Counseling, 23(2), 254–261.PubMedCrossRefGoogle Scholar
  22. Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K., Versnon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiology, Biomarkers & Prevention, 12(4), 304–313.Google Scholar
  23. Koehly, L. M., Peters, J. A., Kenen, R., Hoskins, L. M., Ersig, A. L., Kuhn, N. R., et al. (2009). Characteristics of health information gatherers, disseminators, and blockers within families at risk of hereditary cancer: implications for family health communication interventions. American Journal of Public Health, 99(12), 2203–2209.PubMedPubMedCentralCrossRefGoogle Scholar
  24. Lafroniere, D., Bouchard, K., Godard, B., Simard, J., & Dorval, M. (2013). Family communication following BRCA1/2 genetic testing: a close look at the process. Journal of Genetic Counseling, 22(3), 323–335.CrossRefGoogle Scholar
  25. Levin, M. (2013). Ethical, cultural and religious aspects of hereditary cancer in Jewish communities. Cancer Therapy, 1, 263–268.Google Scholar
  26. Liede, A., Metcalfe, K., Hanna, D., Hoodfar, E., Snyder, C., Durham, C., et al. (2007). Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling. American Journal of Human Genetics, 67(6), 1494–1504.CrossRefGoogle Scholar
  27. MacDonald, D., Sarna, L., van Servellen, G., Bastani, R., Gijer, J. N., & Weitzel, J. N. (2007). Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genetics in Medicine, 9(5), 275–282.PubMedPubMedCentralCrossRefGoogle Scholar
  28. Ministry of Health (2004). Genetic testing- BRCA1 and BRCA2 testing, https://doi.org/www.health.gov.il/hozer/mr12_2004.pdf (Hebrew). Accessed 16/2/2015, Israel.
  29. Ministry of Health (2011). Genetic testing to identify at-risk couples for hereditary diseases in the Jewish population (Hebrew), https://doi.org/www.health.gov.il/genetics. Accessed 16/2/2015.
  30. Ministry of Health (2012). Prevention and early detection of malignant diseases, https://doi.org/www.health.gov.il/hozer/mk10_2012.pdf (Hebrew). Accessed 16/2/2015, Israel.
  31. Mozersky, J. (2013). Risky genes: Genetics, breast cancer and Jewish identity. UK: Routledge.Google Scholar
  32. Nycum, G., Avard, D., & Knoppers, B. (2009). Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information. European Journal of Human Genetics, 17(7), 872–880.PubMedPubMedCentralCrossRefGoogle Scholar
  33. Peters, J. A., Kenen, R., Hoskins, L. M., Koehly, L. M., Graubard, B., Loud, J. T., et al. (2011). Unpacking the blockers: understanding perceptions and social constraints of health communication in hereditary breast ovarian cancer (HBOC) susceptibility families. Journal of Genetic Counseling, 20(5), 450–464.PubMedPubMedCentralCrossRefGoogle Scholar
  34. Prainsack, B., & Siegal, G. (2006). The rise of genetic couplehood: a comparative view of pre-marital genetic screening. Biosocieties, 1, 17–36.CrossRefGoogle Scholar
  35. Raz, A., & Schicktanz, S. (2009a). Lay perceptions of genetic testing in Germany and Israel: the interplay of national culture and individual experience. New Genetics & Society, 28(4), 401–414.CrossRefGoogle Scholar
  36. Raz, A., & Schicktanz, S. (2009b). Diversity and uniformity in genetic responsibility: moral attitudes of patients, relatives, and lay people in Germany and Israel. Medicine, Health Care and Philosophy, 12(4), 433–442.CrossRefGoogle Scholar
  37. Rosner, G., Rosner, S., & Urr-Urtreger, A. (2009). Genetic testing in Israel: an overview. Annual Review of Human Genetics, 10, 175–192.CrossRefGoogle Scholar
  38. Sagi, M., & Uhlmann, W. (2013). Genetic services and training of genetic counselors in Israel: an overview. Journal of Genetic Counseling, 22(6), 890–896.PubMedCrossRefGoogle Scholar
  39. Tercyak, K., Hughes, C., Main, D., Snyder, C., Lynch, J. F., Lynch, H. T., & Lerman, C. (2001). Parental communication of BRCA1/2 genetic test results to children. Patient Education and Counseling, 42(3), 213–224.PubMedPubMedCentralCrossRefGoogle Scholar
  40. van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Bröcker-Vriends, A. H., van Asperen, C. J., Sijmons, R. H., et al. (2007). Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study. Clinical Genetics, 71(1), 35–42.PubMedCrossRefGoogle Scholar
  41. Wiseman, M., Dancyger, C., & Michie, S. (2010). Communicating genetic risk information within families: a review. Familial Cancer, 9(4), 691–703.PubMedCrossRefGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2015

Authors and Affiliations

  • Roy Gilbar
    • 1
    Email author
  • Stavit Shalev
    • 2
  • Ronen Spiegel
    • 3
  • Elon Pras
    • 4
  • Michal Berkenstadt
    • 4
  • Michal Sagi
    • 5
  • Adi Ben-Yehuda
    • 6
  • Pnina Mor
    • 6
  • Shlomit Perry
    • 7
  • Tzipora Falik Zaccai
    • 8
  • Zvi Borochowitz
    • 9
  • Sivia Barnoy
    • 10
  1. 1.School of LawNetanya Academic CollegeNetanyaIsrael
  2. 2.The Genetic InstituteEmek Medical CenterAfulaIsrael
  3. 3.Department of Pediatrics AEmek Medical CenterAfulaIsrael
  4. 4.The Danek Gertner Institute of Human Genetics, Sheba Medical CenterRamat GanIsrael
  5. 5.Department of Human Genetics & Metabolic DiseasesHadassah University Medical CenterJerusalemIsrael
  6. 6.Medical Genetics Institute, Shaare Zedek Medical CenterJerusalemIsrael
  7. 7.Psycho-Oncology Unit, Davidoff CenterRabin Medical Center-Beilinson CampusPetah-TikvaIsrael
  8. 8.Institute of Human GeneticsWestern Galilee HospitalNahariaIsrael
  9. 9.The Simon Winter Institute for Human GeneticsBnai-Zion Medical CenterHaifaIsrael
  10. 10.Nursing Department, School of Health Professions, Sackler Faculty of MedicineTel-Aviv UniversityTel-AvivIsrael

Personalised recommendations