nach oben

Journal of Genetic Counseling

Erschienen in:

25.04.2017 | Original Research

A Qualitative Look into Israeli Genetic Experts’ Insights Regarding Culturally Competent Genetic Counseling and Recommendations for Its Enhancement

verfasst von: Merav Siani, Orit Ben-Zvi Assaraf

Erschienen in: Journal of Genetic Counseling | Ausgabe 6/2017

Einloggen, um Zugang zu erhalten

Abstract

The aim of this study is to describe the perceptions and recommendations of Israeli genetic experts in regard to culturally competent genetic counseling. Qualitative data was collected from 15 semi-structured interviews with Israeli genetics experts. Recurring themes were identified using "thematic analysis" and coded by means of "grounded theory". Our analysis divides data from the genetic experts' interviews into four main themes: Why is culturally competent genetic counseling important? (Describing its contribution to individuals and to society); who is the recipient of culturally competent genetic counseling? (Differentiating the needs of counselees based on genetic education, cultural/religious characteristics and geographic location); what should we include in culturally competent genetic counseling? (Addressing the contents that counseling should convey); how should we perform culturally competent genetic counseling? (Addressing the methods that counseling should employ). In light of the study, we recommend lengthening the genetic counseling session so that counselors will be able to truly gauge all the prior knowledge of the counselees, their religious beliefs, norms, values and attitudes towards genetic testing. We further recommend that students continue to study genetics further into high school. Finally, we suggest adding a preparation session, similar to a prenatal course, to the genetic counseling of lay people so that their genetic knowledge, attitudes and perceptions will be enhanced, leading to more efficient genetic counseling and more informed decisions.

Nur mit Berechtigung zugänglich

Abad, P. J. B., Tan, M. L., Baluyot, M. M. P., Villa, A. Q., Talapian, G. L., Reyes, M. E., et al. (2014). Cultural beliefs on disease causation in the Philippines: Challenge and implications in genetic counseling. Journal of Community Genetics, 5(4), 399–407.CrossRefPubMedPubMedCentral

Al-Gazali, L. I. (2005). Attitudes toward genetic counseling in the United Arab Emirates. Public Health Genomics, 8(1), 48–51.

Aqueel, A. I. (2007). Islamic ethical framework for research into and prevention of genetic diseases. Nature Genetics, 39, 1293–1298.CrossRef

Arasaratnam, L. A. (2013). A review of articles on multiculturalism in 35 years of IJIR. International Journal of Intercultural Relations, 37(6), 676–685.CrossRef

Ashida, S., Goodman, M., Pandya, C., Koehly, L. M., Lachance, C., Stafford, J., & Kaphingst, K. A. (2010). Age differences in genetic knowledge, health literacy and causal beliefs for health conditions. Public Health Genomics, 14(4–5), 307–316.PubMedPubMedCentral

Barlow-Stewart, K., Yeo, S. S., Meiser, B., Goldstein, D., Tucker, K., & Eisenbruch, M. (2006). Toward cultural competence in cancer genetic counseling and genetics education: Lessons learned from Chinese-Australians. Genetics in Medicine, 8(1), 24–32.CrossRefPubMed

Barragan, D. I., Ormond, K. E., Strecker, M. N., & Weil, J. (2011). Concurrent use of cultural health practices and western medicine during pregnancy: Exploring the Mexican experience in the United States. Journal of Genetic Counseling, 20(6), 609–624.CrossRefPubMed

Bauer, M., Durant, J., & Evans, G. (1994). European public perceptions of science. International Journal of Public Opinion Research, 6(2), 163–186.CrossRef

Baxter, P., & Jack, S. (2008). Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report, 13(4), 544–559.

Bernhardt, B. A., Silver, R., Rushton, C. H., Micco, E., & Geller, G. (2010). What keeps you up at night? Genetics professionals' distressing experiences in patient care. Genetics in Medicine, 12(5), 289–297.CrossRefPubMed

Berry, D. K. (2013). A qualitative study on how prenatal genetic counselors prioritize cultural issues when counseling patients. (Master's thesis). Retrieved from http://scholarcommons.Sc.Edu/etd/1249 15/1/2016.

Betancourt, J. R., Green, A. R., Carrillo, J. E., & Ananeh-Firempong 2nd, O. (2003). Defining cultural competence: A practical framework for addressing racial/ethnic disparities in health and health care. Public Health Reports, 118(4), 293–302.CrossRefPubMedPubMedCentral

Biesecker, B. B. (2001). Goals of genetic counseling. Clinical Genetics, 60(5), 323–330.CrossRefPubMed

Biesecker, B. B., & Hamby, L. (2000). What difference the disability community arguments should make for the delivery of prenatal genetic information. In E. Paren & A. Asch (Eds.), Prenatal testing and disability rights (Vol. 2000, pp. 340–357). Washington, DC: Georgetown University Press.

Boyatzis, R. E. (1998). Transforming qualitative information: Thematic analysis and code development. Thousand Oaks: Sage.

Brinkmann, S. (2014). Interview. New York: Springer.CrossRef

Charmaz, K. (2014). Constructing grounded theory. Thousand Oaks: Sage.

Condit, C. (2010). Public understandings of genetics and health. Clinical Genetics, 77, 1–9.CrossRefPubMed

Corbin, J. M., & Strauss, A. L. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks: Sage Publication Inc Retrieved from: http://www.Loc.Gov/catdir/toc/ecip0725/2007034189.Html. 10/12/2015.CrossRef

Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory Into Practice, 39(3), 124–130.CrossRef

Devers, K. J., & Frankel, R. M. (2000). Study design in qualitative research—2: Sampling and data collection strategies. Education and Health, 13(2), 263–271.CrossRef

Dey, I. (1999). Grounding grounded theory: Guidelines for qualitative inquiry. San Diego: Academic Press.CrossRef

Dickerson, D. L., Dawkins, K. R., & Penick, J. E. (2008). Clergy’s views of the relationship between science and religious faith and the implications for science education. Science Education, 17, 359–386.CrossRef

Donley, G., Hull, S. C., & Berkman, B. E. (2012). Prenatal whole genome sequencing. Hastings Center Report, 42(4), 28–40.CrossRefPubMedPubMedCentral

Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115.CrossRefPubMed

Enns, E. E., Boudreault, P., & Palmer, C. G. (2010). Examining the relationship between genetic counselors’ attitudes toward deaf people and the genetic counseling session. Journal of Genetic Counseling, 19(2), 161–173.CrossRefPubMed

Falcone, D. C., McCarty Wood, E., Xie, S. X., Siderowf, A., & Van Deerlin, V. M. (2011). Genetic testing and Parkinson disease: Assessment of patient knowledge, attitudes, and interest. Journal of Genetic Counseling, 20, 384–395.CrossRefPubMedPubMedCentral

Frueh, F. W., & Gurwitz, D. (2004). From pharmacogenetics to personalized medicine: A vital need for educating health professionals and the community. Pharmacogenomics, 5(5), 571–579.CrossRefPubMed

Frumkin, A., & Zlotogora, J. (2007). Genetic screening for reproductive purposes at school: Is it a good strategy? American Journal of Medical Genetics, 146A, 264–269.CrossRef

Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine Pub. Co..

Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.CrossRefPubMed

Grazi, R. V., & Wolowelsky, J. B. (2015). Cultural concerns when counseling Orthodox Jewish couples for genetic screening and PGD. Journal of Genetic Counseling, 24(6), 878–881.CrossRefPubMed

Gschmeidler, B., Flatscher-Thöni, M., & Knitel-Grabher, E. (2016). Genetics in the medical and psychosocial practice: On the role of value hierarchies in counselling. Journal of Public Health, 24, 253–261.CrossRef

Haga, S. B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., & Willard, H. F. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327–335.CrossRefPubMedPubMedCentral

Israel Ministry of Education (2015). Life science curriculum for high school (Hebrew). http://cms.education.gov.il/EducationCMS/Units/Mazkirut_Pedagogit/Biology/TochnitLimudim/tochnitmutemet.htm. Retrieved 5/4/17.

Israel Ministry of Education (2016). Life science curriculum for junior high school (Hebrew). http://cms.education.gov.il/EducationCMS/Units/Tochniyot_Limudim/science_tech/TochnitMeodkenet/chatab.htm. Retrieved 10/1/2016.

Khan, N., Benson, J., MacLeod, R., & Kingston, H. (2010). Developing and evaluating a culturally appropriate genetic service for consanguineous south Asian families. Journal of Community Genetics, 1(2), 73–81.CrossRefPubMedPubMedCentral

Klitzman, R. L. (2010). Misunderstandings concerning genetics among patients confronting genetic disease. Journal of Genetic Counseling, 19, 430–446.CrossRefPubMedPubMedCentral

Kvale, S. (1996). Interviews: An introduction to qualitative research interviewing. London: Sage.

Lanie, A. D., Jayaratne, T. E., Sheldon, J. P., Kardia, S. L., Anderson, E. S., Feldbaum, M., & Petty, E. M. (2004). Exploring the public understanding of basic genetic concepts. Journal of Genetic Counseling, 13(4), 305–320.CrossRefPubMedPubMedCentral

Lee, O., Deaktor, R. A., Hart, J. E., Cuevas, P., & Enders, C. (2005). An instructional intervention’s impact on the science and literacy achievement of culturally and linguistically diverse elementary students. Journal of Research in Science Teaching, 42(8), 857–887.CrossRef

Lewis, L. J. (2002). Models of genetic counseling and their effects on multicultural genetic counseling. Journal of Genetic Counseling, 11(3), 193–212.CrossRefPubMed

Mays, N., & Pope, C. (2000). Qualitative research in health care: Assessing quality in qualitative research. BMJ [British Medical Journal], 320(7226), 50.CrossRef

Michie, S., Lester, K., Pinto, J., & Marteau, T. M. (2005). Communicating risk information in genetic counseling: An observational study. Health Education & Behavior Journal, 32, 589–598.CrossRef

Middleton, A., Robson, F., Burnell, L., & Ahmed, M. (2007). Providing a transcultural genetic counseling service in the UK. Journal of Genetic Counseling, 16(5), 567–582.CrossRefPubMed

Organization of Genetic Counselors in Israel (2015). Retrieved from: http://www.genetic-counselors.org.il 10/12/2015.

Ormond, K. E., Wheeler, M. T., Hudgins, L., Klein, T. E., Butte, A. J., Altman, R. B., et al. (2010). Challenges in the clinical application of whole-genome sequencing. The Lancet, 375(9727), 1749–1751.CrossRef

Ota Wang, V. (2001). Multicultural genetic counseling: Then, now, and in the 21st century. American Journal of Medical Genetics, 106, 208–215.CrossRef

Paniagua, C. T., & Taylor, R. E. (2008). The cultural lens of genomics. OJIN: The Online Journal of Issues in Nursing, 13(1).

Parette, P. (1999). Transition planning with families across cultures. Career Development for Exceptional Individuals, 22, 213–211.CrossRef

Parsons, E. C., & Carlone, H. B. (2013). Culture and science education in the 21st century: Extending and making the cultural box more inclusive. Journal of Research in Science Teaching, 50(1), 1–11.CrossRef

Raz, A. E. (2004). Important to test, important to support: Attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel. Social Science & Medicine, 59(9), 1857–1866.CrossRef

Remennick, L. (2006). The quest for the perfect baby: Why do Israeli women seek prenatal genetic testing? Sociology of Health & Illness, 28(1), 21–53.

Ritchie J. (2003). The applications of qualitative methods to social research in Ritchie, J. And Lewis, J., (Eds.). Qualitative research practice: A guide for social science students and researchers. London: Sage.

Ritchie J. & Ornston R. (2013). The Applications of Qualitative Methods to Social Research in Ritchie, J., Lewis, J., Nicholls, C. M., & Ormston, R. (Eds.). (2013). Qualitative research practice: A guide for social science students and researchers. London:Sage.

Roter, D. L., Erby, L., Larson, S., & Ellington, L. (2009). Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning. Patient Education and Counseling, 75(3), 392–397.CrossRefPubMed

Shaw, A., & Hurst, J. A. (2008). “What is this genetics, anyway?” understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services. Journal of Genetic Counseling, 17, 373–383.CrossRefPubMed

Shyu, Y. I. L., Tsai, J. L., & Tsai, W. C. (2010). Explaining and selecting treatments for autism: Parental explanatory models in Taiwan. Journal of Autism and Developmental Disorders, 40(11), 1323–1331.CrossRefPubMed

Siani, M., & Assaraf, O. B. Z. (2015). University Students' attitudes towards genetic testing: A comparative study. American Journal of Public Health Research, 3(3), 81–90.CrossRef

Siani, M., & Assaraf, O. B. Z. (2016a). The moral reasoning of genetic dilemmas amongst Jewish Israeli undergraduate students with different religious affiliations and scientific backgrounds. Journal of Genetic Counseling, 25(3), 596–609.CrossRefPubMed

Siani, M., & Assaraf, O. B. Z. (2016b). Should I perform genetic testing? A Qualitative Look into the Decision Making Considerations of Religious Israeli Undergraduate Students. Journal of Genetic Counseling. doi:10.1007/s10897-016-9942-0.PubMed

Starr, L. J. (2010). Does anyone really know anything? An exploration of constructivist meaning and identity in the tension between scientific and religious knowledge. Cultural Studies of Science Education, 5, 191–200.CrossRef

State of Israel, Ministry of Health, Process for Obtaining a Status Recognition Certificate – Genetic Counseling (2016). http://www.health.gov.il/English/Services/MedicalAndHealthProfessions/ClinicalGenetics/Pages/GeneticCounselor.aspx. Retreived 22/12/16.

Tal, T., Kali, Y., Magid, S., & Madhok, J. J. (2011). Enhancing the authenticity of a web-based module for teaching simple inheritance. In Sadler T.D. (Ed.), Socioscientific issues in the classroom: Teaching, learning and research. Contemporary Trends in Science Education, 39, 11–38.CrossRef

Vedder-Weiss, D., & Fortus, D. (2012). Adolescents' declining motivation to learn science: A follow-up study. Journal of Research in Science Teaching, 49(9), 1057–1095.CrossRef

Weil, J., & Mittman, I. (1993). A teaching framework for cross-cultural genetic counseling. Journal of Genetic Counseling, 2(3), 159–169.CrossRefPubMed

Titel: A Qualitative Look into Israeli Genetic Experts’ Insights Regarding Culturally Competent Genetic Counseling and Recommendations for Its Enhancement
verfasst von: Merav Siani
Orit Ben-Zvi Assaraf
Publikationsdatum: 25.04.2017
Verlag: Springer US
Erschienen in: Journal of Genetic Counseling / Ausgabe 6/2017
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-017-0104-9

Neu im Fachgebiet Gynäkologie und Geburtshilfe

17.04.2024 | Postoperative nausea and vomiting | Nachrichten

Update Gynäkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert – ganz bequem per eMail.

Newsletter bestellen

Live-Webinar: Aktuelle Leitlinien bei Herz-Kreislauf-Erkrankungen

Springer Medizin

A Qualitative Look into Israeli Genetic Experts’ Insights Regarding Culturally Competent Genetic Counseling and Recommendations for Its Enhancement

Abstract

Neu im Fachgebiet Gynäkologie und Geburtshilfe

Hochrisiko-Eingriffe für postoperative Übelkeit

Adjuvante Brustkrebstherapie: Doppelt hält besser

Manche Gestagene können das Risiko für Meningeome erhöhen

Stillende Frauen haben geringeres kardiovaskuläres Risiko

Update Gynäkologie

Live-Webinar: Aktuelle Leitlinien bei Herz-Kreislauf-Erkrankungen

Springer Medizin

Abstract

Bitte loggen Sie sich ein, um Zugang zu diesem Inhalt zu erhalten

Weitere Artikel der Ausgabe 6/2017

When to Consider Risk-Reducing Mastectomy in BRCA1/BRCA2 Mutation Carriers with Advanced Stage Ovarian Cancer: a Case Study Illustrating the Genetic Counseling Challenges

“It was a lot Tougher than I Thought It would be”. A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier

The Efficacy of Genetic Counseling for Psychiatric Disorders: a Meta-Analysis

Perspectives and Practices of Athletic Trainers and Team Physicians Implementing the 2010 NCAA Sickle Cell Trait Screening Policy

“If It Helps, It’s Worth a Try”: an Investigation of Perceptions and Attitudes about Genetic Counseling among Southern Manitoba Hutterites

“It was an Emotional Baby”: Previvors’ Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk

Neu im Fachgebiet Gynäkologie und Geburtshilfe

Hochrisiko-Eingriffe für postoperative Übelkeit

Adjuvante Brustkrebstherapie: Doppelt hält besser

Manche Gestagene können das Risiko für Meningeome erhöhen

Stillende Frauen haben geringeres kardiovaskuläres Risiko

Update Gynäkologie