Review the following key ethics terms:
Read Genetic Screening by Burke, et al. Focus on the content found on pages 154- 156.
Then watch Nathan’s Story: Tay-Sachs Disease in the Irish Population followed by Dr. Fullerton’s introductory video.
Dr. Fullerton introduces the following case:
“A young couple who are interested in starting a family come to you to discuss undergoing genetic carrier testing prior to trying to conceive. Both members of the couple are healthy and there is no known history of genetic disease in either patient’s background. However, the husband does have a younger brother affected by Down Syndrome who lives semi- independently in a group home. They each self-identify as being of Caucasian (not Irish or French Canadian) ethnicity and report no known Ashkenazi or Jewish Ancestry.”
“They are now aware of a wide range of recessive genetic conditions for which they could be tested. They simply want to avoid having a child with a truly devastating prognosis such as Tay-Sachs disease. Therefore, they request a test of the HEXA gene only.”
Should you honor this request or recommend that the couple consider carrier testing for additional genetic conditions instead?
COMPLETE the 4-boxes – use this 4-Box worksheet for guidance.
HOW SHOULD YOU RESPOND? use some of these ethics concepts to guide your answer:
- CONSEQUENCES: What are the harms and benefits?
- RULES: What are the norms, laws, standards of practice, legal and ethical rights, obligations and responsibilities?
- VIRTUES: What might it mean to manifest sympathy, empathy, courageousness, trustworthiness, openness, respectfulness, or other virtues in this case?
- SOCIAL RELATIONS: Consider the interpersonal relations, social norms, and power structures.
If you’re interested in further investigation… (not required)
These two links are optional and are intended for the student who has prior experience with the topic and/ or a strong desire for additional information.
For more information about genetic testing we would refer you to this video by Dr. Robin Bennett, UW Professor of of Medicine and Medical Genetics: https://mediasite.hs.washington.edu/Mediasite/Play/42b4867d9fe14589838c9415498a19a11d.
Also see “Carrier testing for Ashkenazi Jewish disorders in the prenatal setting” by Ferriera et al. This article was published in the American Journal of Obstetrics and Gynecology. It is above the level of the average foundations phase student.
For more information about ethical issues around genetic testing in Ashkenazi Jewish populations read “A young couple tests compatibility” and then explore the Dor Yeshorim website.