Genetic counseling is beginning to be recognized as a very complex endeavor, as is its training. Attempts to list the separate purposes to be achieved, like the findings of research and evaluation of the process, have been unsatisfactory and even contradictory. These attempts are compared with somewhat similar results in quite different fields of the public understanding of science. The paper discusses these results in the context of first-year and post-graduate courses in human genetics given in a Brazilian university. We suggest that the students' reactions to genetic counseling may be better understood on a two domain model of knowing, and that an explicit understanding of this perspective might be of assistance to trainee genetic counselors while they are learning how to help clients more effectively.
Get full access to this article
View all access options for this article.
References
1.
and W. F. Anderson, “Therapeutic Horizons: Human Gene Therapy,”Nature392 (1998): 25-30 (supplement).
2.
S. McIntyre , “The Public Understanding of Science or The Scientific Understanding of the Public? A Review of the Social Context of the New Genetics,”Public Understanding of Science4 (1995): 223-232.
3.
and A. Kerr, S. Cunningham-Burley, and A. Amos, “Eugenics and the New Genetics in Britain: Examining Contemporary Professionals' Accounts,”Science, Technology & Human Values23, no. 2 (1998): 175-198.
4.
F. C. Fraser , “Genetic Counseling,”American Journal of Genetics26 (1974): 636-659.
5.
M. Revel , “Genetic Counseling,”Proceedings of the International Bioethics Committee of UNESCO1 (1995): 9-37.
6.
Revel , “Genetic Counseling.”
7.
and P. S. Harper, “Personal Experiences of Genetic Diseases: A Clinical Geneticist's Reaction.” In The Troubled Helix: Social and Psychological Implications of the New Human Genetics, ed. T. Marteau and M. Richards (Cambridge: Cambridge Univ. Press, 1996), 54-59.
8.
H. G. Serra , C. S. B. Martins, R. B. Paiva e Silva, and A. S. Ramalho, “Evaluation of Genetic Counselling offered to Brazilian Carriers of the Beta-Thalassemia Trait and to their Relatives,”Brazilian Journal of Genetics18, no. 3 (1995): 475-484.
9.
Serraet al. , “Evaluation of Genetic Counselling,” p. 483.
10.
R. J. Rona , R. Beech, S. Mandalia, D. Donnai, H. Kingston, R. Harris, O. Wilson, C. Axtell, A. V. Swan, and F. Kavanagh, “The Influence of Genetic Counselling in the Era of DNA Testing on Knowledge, Reproductive Intentions and Psychological Wellbeing,”Clinical Genetics46 (1994): 198-204.
11.
and S. Lloyd, M. Watson, B. Waites, L. Meyer, R. Eeles, S. Ebbs, and A. Tylee, “Familial Breast Cancer: A Controlled Study of Risk Perception, Psychological Morbidity, and Health Beliefs in Women Attending for Genetic Counseling,”British Journal of Cancer74 (1996): 482-487.
12.
M. A. Nance , E. A. Sevenich, and L. J. Schut, “Knowledge of Genetics and Attitudes toward Genetic Tests in Two Hereditary Ataxia (SCA1) Kindreds,”American Journal of Medical Genetics54 (1994): 242-248.
13.
S. Michie and T. Marteau, “Genetic Counselling: Some Issues of Theory and Practice.” In The Troubled Helix: Social and Psychological Implications of the New Human Genetics, ed. T. Marteau and M. Richards (Cambridge: Cambridge Univ. Press, 1996), 104-122.
14.
M. F. Myers , B. A. Bernhardt, E. S. Tambor, and N. A. Holtzman, “Involving Consumers in the Development of an Educational Program for Cystic Fibrosis Carrier Screening,”American Journal of Human Genetics54 (1994): 719-726.
15.
and S. Michie, D. Axworthy, J. Weinman, and T. M. Marteau, “Genetic Counselling: Predicting Patients' Outcomes,”Psychology and Health11 (1996): 797-807.
16.
and M. Richards, “Lay Knowledge of Inheritance and Genetic Risk: A Review and a Hypothesis,”Health Care Analysis4 (1996): 1861-1864.
17.
Lipman , “Prenatal Genetic Testing.”
18.
Michie and Marteau, “Genetic Counselling.”
19.
A. Clarke , “What is Genetic Counselling?” In Genetic Counselling—Practice and Principles, ed. A. Clarke (London: Routledge, 1994), 1-28.
20.
Clarke , “What is Genetic Counselling?”
21.
R. Rapp , “Refusing Prenatal Diagnosis: The Meaning of Bioscience in a Multicultural World,”Science, Technology & Human Values23, no. 1 (1998): 45-70.
22.
see also M. Shamos, The Myth of Scientific Literacy (New York: Rutgers Univ. Press, 1995).
23.
H. Lambert and H. Rose, “Disembodied Knowledge? Making Sense of Medical Knowledge.” Paper presented at “Policies and Publics for Public Understanding of Science and Technology,” Science Museum, London, April 1990.
24.
M. Michael , “Lay Discourses of Science: Science in General, Science in Particular, and Self,”Science, Technology & Human Values17, no. 3 (1992): 313-333.
25.
and K. Kortland, “An STS Case Study about Students' Decision Making on the Waste Issue,”Science Education80, no. 6 (1996): 673-689.
26.
J. Solomon , “The Classroom Discussion of Science-Based Social Issues Presented on Television: Knowledge, Attitudes and Values,”International Journal of Science Education14, no. 4 (1992): 431-444.
27.
A. Schutz and T. Luckmann, Structures of the Life-World (New York: Heinemann, 1973), 9.
28.
Schutz and Luckmann, Structures of the Life-World, 168.
29.
J. Solomon , Getting to Know about Energy (London: Falmer Press, 1994).
30.
C. Myser , I. Kerridge, and K. Mitchell, “Ethical Reasoning and Decision-Making in the Clinical Setting: Assessing the Process,”Medical Education29 (1995): 29-33.
31.
D. Layton , E. Jenkins, S. MacGill, and A. Davey, Inarticulate Science (Nafferton: Studies in Education, 1993).
32.
Serraet al. , “Evaluation of Genetic Counselling.”
33.
Laytonet al. , Inarticulate Science.
34.
H. Becker , B. Geer, E. Hughes, and A. Strauss, Boys in White (Chicago: Univ. of Chicago Press, 1961).
35.
R. Rorty , Objectivity, Relativism, and Truth (Cambridge: Cambridge Univ. Press, 1991).
36.
V. L. Rosa , “Human Genetics and Education—Discussing Ethics with Brazilian University Students.” Paper presented to 8th IOSTE Conference, Edmonton, Alberta, Canada, 1996.
37.
The content of the course in human genetics which is taken by health science undergraduates is very broad. It ranges from elements of classical genetics to the latest topics in molecular biology including elements, structures and mechanisms of inheritance at molecular level, Mendelian patters of inheritance, with examples of normal and abnormal conditions segregating in families and populations, normal and abnormal cytogenetics; blood group systems, inborn errors of metabolism and pharmocogenics; aspects of human evolution; and medical applications of genetics. This last section includes antenatal diagnosis and genetic counseling.
38.
These classroom activities could also be described as simulations. For exploring the mechanisms associated with the way in which genes work in cells the students are given three sets of cards corresponding to DNA bases, RNA bases and amino acids. Starting from an hypothetical DNA sequence students combine cards to form a messenger RNA and then the resulting polypeptide combination. They can also use these cards to explore the possible effects of deletions and substitutions in different DNA sequences.
39.
The American Board of Genetic Counseling maintains a website at http://www.faseb.org/genetics/abgc/abgcmenu.htm.
40.
D. Brunoni , “Estado atual do desenvolvimento dos serviços de genética médica no Brasil,”Brazilian Journal of Genetics20, no. 1 (1997): 11-23.
41.
Brunoni, “Estado atual do desenvolvimento.”
42.
Revel , “Genetic Counselling.”
43.
L. Walters , “Ethical Obligations of Genetic Counsellors.” In Prescribing Our Future: Ethical Challenges in Genetic Counselling, ed. D. M. Bartels, B. S. LeRoy, and A. L. Caplan (New York: Aldine de Gruyter, 1993), 131-147.
