n Module 3, Lecture 1, we learned about the four core principles of human subjects research (autonomy, beneficence, nonmaleficence, and justice) and laid out an applied ethical framework:
Identify the ethical issues and specific ethical problems in the case.
Identify the key facts and interested parties.
Identify professional ethical principles, policies, and law relevant to the ethical issues of the case
Identify the possible alternative courses of action, the ethical arguments for and against their implementation, and their likely outcomes
Choose the course that is best supported by the preceding analysis
In Module 3, Lecture 2 we saw how these principles and framework could be applied to the case of He Jiankui and his work on human heritable genome editing. Now it’s time to put these principles and framework into practice for yourself. Don’t worry, we’re only going to focus on steps 1 and 2 in our applied ethical framework.
For this assignment, consider what you read in Perusall activity by Johnston and Baylis (2004). Johnston and Baylis describe an older case of genome editing therapy for a disease called X-linked SCID (Severe Combined Immune Deficiency). Following a novel gene therapy for their X-linked SCID, two children in the clinical trial developed leukaemia. This article provides a case study of risks associated with genome editing for biomedical therapies.