Description: Read the title of the article referenced under the picture below that the link further down will take you to. How would you answer that question (and yes, I realize you likely want more information before responding)? When I talk in class about genetic testing and pre-natal screening, I point out that with the leaps and bounds that the field of human genetics is moving forward a fast-growing career path is that of genetic counsellor. A big part of what genetics counselors do involves ethics and as such it is entirely appropriate that the article linked below is based on a question asked of a philosopher of ethics who contributes questions and answers to the New York Times Magazine every week. So, with your quick answer (or refusal to quickly answer) the initial question above and your related thoughts in mind, go to the linked article and read the question and the thoughtful considerations (answers is too simple a word) provided by the philosopher.
Source: I’ve Inherited a Fatal Disease. Can I Tell My Sister’s Children About Their Risk? Kwame Anthony Appiah, The Ethicist, The New York Times Magazine.
Date: February 4, 2020
Now that you have a big more of the context for the question in mind do you have an answer? The case study implied in the question is one of the most difficult from a parental decision-making perspective. What if you have a genetic condition or disease that will likely be fatal, that could potentially be passed along to your children but about which, without testing, you will not become aware until after you have had your children? See what I mean about genetic counselling being a fast growing, and important, field? Lots to consider!
Questions for Discussion:
- Do you think the question asker in the linked article should speak with her sister’s children? Why or why not?
- How are parental pre-conception responsibilities changing (potentially) given our hugely increased and increasing knowledge of genetics and genetic transmission?
- What sort of training do you think future genetic counselors should be required to take before they start work in their profession!
References (Read Further):
Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Estabrooks Hahn, S., Strecker, M. N., & Williams, J. L. (2006). A new definition of genetic counseling: National Society of Genetic Counselors’ task force report. Journal of genetic counseling, 15(2), 77-83. Link
Biesecker, B. B. (2001). Goals of genetic counseling. Clinical genetics, 60(5), 323-330. Link
Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Teaching and counseling. Journal of Genetic Counseling, 6(3), 287-295. Link
Bennett, R. L., Motulsky, A. G., Bittles, A., Hudgins, L., Uhrich, S., Doyle, D. L., … & Steiner, R. D. (2002). Genetic counseling and screening of consanguineous couples and their offspring: recommendations of the National Society of Genetic Counselors. Journal of genetic counseling, 11(2), 97-119. Link
Braithwaite, D., Emery, J., Walter, F., Prevost, A. T., & Sutton, S. (2004). Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. Journal of the National Cancer Institute, 96(2), 122-133. Link
Goldman, J. S., Hahn, S. E., Catania, J. W., Larusse-Eckert, S., Butson, M. B., Rumbaugh, M., … & Bird, T. (2011). Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors. Genetics in medicine, 13(6), 597-605. Link
Veach, P. M., Bartels, D. M., & LeRoy, B. S. (2007). Coming full circle: A reciprocal‐engagement model of genetic counseling practice. Journal of genetic counseling, 16(6), 713-728. Link