Abstract
This is a report of the experience of several months' ethnographic research by a genetic counselor researcher in a cancer treatment clinic. One goal of the exercise was to directly experience a method of qualitative research known as ethnography, which relies heavily on participant-observation, in an applied clinical setting. Another goal was to explore a previously undescribed research area in the genetic counseling literature, namely, the meaning of cancer and cancer treatment for affected individuals and their support companions. Here we report on a personal account of the experiences of conducting and publishing the research. The preliminary analysis and results of this field experience are published elsewhere (Peters et al. (2001) J Genet Counsel 10(2):151–168.). These initial findings support the feasibility of genetic counselors, who are trained in specific social science methodologies, to conduct qualitative research pertinent to genetic counseling practice.
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REFERENCES
Atkinson P, Hammersley M (1995) Ethnography. In: Denzin N, Lincoln Y (eds) Handbook of Qualitative Research. Thousand Oaks, CA: Sage.
Beeson D (1997) Nuance, complexity, and context: Qualitative methods in genetic counseling research. J Genet Counsel 6:21–44.
Beeson D, Golbus MS (1979) Anxiety engendered by amniocentesis. Birth Defects 15:191–197.
Benkendorf JL, Callanan NP, Grobstein R, Schmerler S, Fitzgerald KT (1992) An explication of the National Society of Genetic Counselors (NSGC) Code of Ethics. Genet Counsel 1:31–40.
Blau P (1986) Exchange and Power in Social Life. New Brunswick, NJ: Transaction Books.
Chapple A, May C, Campion P (2000) Lay understanding of genetic disease: A Brittish study of families attending a genetic counseling service. J Genet Counsel 4:281–300.
DeMarrais K (1998) Inside Stories: Qualitative Research Reflections. Mahwah, NJ: Lawrence Erlbaum Associates.
Denzin N, Lincoln Y (1994) Handbook of Qualitative Research. Thousand Oaks, CA: Sage.
Fetterman D (1998) Ethnography: Step by Step. Thousand Oaks, CA: Sage.
Green J, Richards M, Murton F, Statham H, Hallowell N (1997) Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. J Genet Counsel 6:45–60.
Hallowell N, Richards MPM (1997) Understanding life's lottery. J Health Psychol 2:31–43.
Hallowell N, Statham H, Murton F, Green J, Richards M (1997) “Talking about chance”: The presentation of risk information during genetic counseling for breast and ovarian cancer. J Genet Counsel 6:269–286.
Hammersley M, Atkinson P (1995) Ethnography: Principles in practice. New York: Routledge.
Kenen R, Smith ACM, Watkins C, Zuber-Pittore C (1997) To use or not to use?: Factors involved in decision-making regarding genetic counseling and prenatal diagnosis from the male partners perspective. J Genet Counsel 6:443, 444.
Lareau A, Shultz J (2000) Journeys Through Ethnography. Boulder, CO: Westview Press.
Lippman-Hand AL, Fraser FC (1979) Genetic counseling: Provision and reception of information. Am J Med Genet 3:113–127.
OPRR (2000) Protecting Human Research Subjects: Institutional Review Board Guidebook. Washington, DC: U.S. Government Printing Office.
Peters J, McAllister C, Rubinstein W (2001) Qualitative cancer genetic counseling research, Part II: Findings of an exploratory ethnographic study in a cancer clinic. J Genet Counsel 10:133–150.
Pilarsky R, Peters J (1999) Branching out to other health professionals. Perspect Genet Counsel 21:4.
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This work was completed at the University of Pittsburgh before employment at the National Cancer Institute (NCI) and does not represent the views of the NCI, the National Institutes of Health, the Department of Health and Human Services, or the Federal Government
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Peters, J.A., McAllister, C.L. & Rubinstein, W.S. Qualitative Cancer Genetic Counseling Research, Part I: Ethnography in a Cancer Clinic. Journal of Genetic Counseling 10, 133–150 (2001). https://doi.org/10.1023/A:1009491714527
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DOI: https://doi.org/10.1023/A:1009491714527