Abstract
In 2005, I observed 20 prenatal genetic counseling sessions at Vanderbilt University Medical Center. With each patient’s permission, I sat as a student observer in a small patient education room listening and watching the conversations that unfolded between the genetic counselors, patients, and family members. The sessions usually involved a pregnant woman who had been referred for amniocentesis either because she was of advanced maternal age (AMA) or because a screening test indicated she was in a high-risk group for having a child with a chromosomal abnormality. Initially, what attracted me to this area of research was the ethical complexity of decision making in pregnancies diagnosed with genetic abnormalities, but my observations confronted me with the equally complex phenomena of communicating about genetics. The interest in comparing and contrasting the styles of four different genetic counselors prompted the research question that guides this project: What are and what should be the dominant model(s) of communication between genetic counselors and patients?
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Notes
- 1.
This opportunity informed my research on the theoretical and ethical issues of genetic counseling and prenatal diagnosis . These sessions were not recorded nor did I take notes during the session. My observations were not intended to produce data for empirical research. Listening and watching these sessions enriched my understanding of the literature and allowed me to imagine more realistic cases.
- 2.
Amniocentesis is a procedure that involves inserting a long thin syringe into the woman’s abdomen and drawing a sample of amniotic fluid. Before inserting the syringe, the sonographer scans to detect fetal viability, age, number, normality and position in the uterus. Knowing where the fetus is provides the optimal position for needle insertion by establishing the position of the fetus and placenta Typically done as an outpatient procedure in the 15th or 16th week but it can be done with increased risk as early as 10–14 weeks. Robert L. Nussbaum and others, Thompson & Thompson Genetics in Medicine, 6th/ed. (Philadelphia: Saunders, 2001).
- 3.
E. B. Hook, P. K. Cross, and D. M. Schreinemachers, “Chromosomal Abnormality Rates at Amniocentesis and in Live-Born Infants,” Jama 249, no. 15 (1983): 2034–8. Hook’s study and subsequent revisions by other authors indicate that the risk of chromosomal abnormalities is affected by advancing maternal age. Pregnant women who will be 35 or older at their delivery are classified as advanced maternal age by health care professionals providing prenatal care. This status entails routine referrals for a detailed ultrasound and amniocentesis . 35-years of age is significant because the risk of miscarriage from amniocentesis intersects with the risk of having a child with Down Syndrome. For revised numbers used below, see L. J. Heffner, “Advanced Maternal Age--How Old Is Too Old?,” N Engl J Med 351, no. 19 (2004). 1927–9.
- 4.
S. Kessler , “Psychological Aspects of Genetic Counseling: Xii. More on Counseling Skills,” J Genet Couns 7, no. 3 (1998): 263–64.
- 5.
John Durham Peters , Speaking into the Air : A History of the Idea of Communication (Chicago: University of Chicago Press, 1999), 109–36. From the spiritualist tradition , Peters moves ‘Toward A More Robust Vision of Spirit’ in chapter 4. He directly compares the spiritualist tradition and the robust vision of spirit as working at the same level of explanation. He also places the technical and therapeutic visions of communication within the spiritualist tradition .
- 6.
This risk level is the standard and lacks sensitivity to the level of experience of the physician performing the procedure.
- 7.
When the Human Genome Project (HGP) formally began in 1990, the National Institute of Health and the Department of Energy dedicated a portion (3–5 %) of the HGP budget to investigate the ethical , social, and legal implications of the human genome project. This funding generated what is called E.LS.I research.
- 8.
R. L. Berkowitz, J. Roberts, and H. Minkoff, “Challenging the Strategy of Maternal Age-Based Prenatal Genetic Counseling,” Jama 295, no. 12 (2006): 1446–8, R. G. Resta, “Changing Demographics of Advanced Maternal Age (Ama) and the Impact on the Predicted Incidence of Down Syndrome in the United States: Implications for Prenatal Screening and Genetic Counseling,” Am J Med Genet A 133, no. 1 (2005): 31–36.
- 9.
See Ruth Schwartz Cowan’s “Women’s Role in the History of Amniocentesis and Chorionic Villi Sampling” in Karen H. Rothenberg and Elizabeth J. Thomson, Women and Prenatal Testing : Facing the Challenges of Genetic Technology, Women and Health Series (Columbus: Ohio State University Press, 1994), 35–48.
- 10.
Barbara Katz Rothman, The Tentative Pregnancy : Prenatal Diagnosis and the Future of Motherhood (New York: Viking, 1986).
- 11.
S. Kessler and E. K. Levine, “Psychological Aspects of Genetic Counseling. Iv. The Subjective Assessment of Probability,” Am J Med Genet 28, no. 2 (1987): 361–70, A. Lippman-Hand and F. C. Fraser, “Genetic Counseling – the Postcounseling Period: I. Parents’ Perceptions of Uncertainty ,” Am J Med Genet 4, no. 1 (1979): 51–71, A. Lippman-Hand and F. C. Fraser, “Genetic Counseling: Provision and Reception of Information,” Am J Med Genet 3, no. 2 (1979): 113–27, J. R. Sorenson , C. M. Kavanagh, and M. Mucatel, “Client Learning of Risk and Diagnosis in Genetic Counseling,” Birth Defects Orig Artic Ser 17, no. 1 (1981): 215–28, D. C. Wertz, J. R. Sorenson , and T. C. Heeren, “Clients’ Interpretation of Risks Provided in Genetic Counseling,” Am J Hum Genet 39, no. 2 (1986): 253–64.
- 12.
Erik Parens and Adrienne Asch , Prenatal Testing and Disability Rights, Hastings Center Studies in Ethics (Washington, D.C.: Georgetown University Press, 2000).; R. C. Baumiller, “Ethical Issues in Genetics,” Birth Defects Orig Artic Ser 10, no. 10 (1974): 297–300, Kessler , “Psychological Aspects of Genetic Counseling: Xii. More on Counseling Skills,” 263–78.; Ted Peters , For the Love of Children : Genetic Technology and the Future of the Family, 1st ed., Family, Religion, and Culture (Louisville, Ky.: Westminster John Knox Press, 1996).
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Fanning, J.B. (2016). Introduction. In: Normative and Pragmatic Dimensions of Genetic Counseling. Philosophy and Medicine, vol 124. Springer, Cham. https://doi.org/10.1007/978-3-319-44929-6_1
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