Age of Treatment: The Clinical, Social and Ethical Implications of Genetic Therapies

Gene and cell therapies are becoming available for a vast number of genetic conditions that span many disease areas. Many of these therapies hold great promise and offer hope to patients and their families. Some of these therapies offer a treatment option for an otherwise non-treatable life limiting condition. While other therapies offer a treatment alternative to conditions with available effective treatments with longer track records regarding their efficacy. For some conditions, there are several genetic therapies. A patient’s decision to pursue gene therapy is influenced by the severity of their condition, availability of established treatments and the risks associated with these newer, and in some cases, less proven therapies. The risks and sacrifices that come with gene therapy differ as well. This session will use examples of clinically available gene therapy options within four different disease areas, including neuromuscular disorders, inherited retinopathies, hemophilia and sickle cell disease, to highlight their unique considerations, challenges and social and ethical implications. The session will also explore best practices to prepare and consent patients for these therapies and consider how genetic counselors can be involved in developing consent protocols at their institutions. 

Presented by:
1. Kristy Lee, MS, CGC
2. Brianna Gross, MS, CGC
3. Emily Place, MS, LCGC
4. Akshay Sharma, MBBS, MSc 

Learning Objectives:
1. Summarize the basic science and delivery mechanisms behind in vivo and ex vivo gene therapies.
2. Define the ethical, moral and social barriers to the uptake of gene therapy for conditions in different disease areas, and ways to remedy them.
3. Construct best practices for genetic counselor involvement and patient consent for cell and gene therapies.
4. Identify patient motivators and apprehensions to pursue gene therapy in a variety of disease areas. 

Continuing Education Unit Approval:
The National Society of Genetic Counselors (NSGC) has authorized National Society of Genetic Counselors (NSGC) to offer up to 1.5 Category 1 contact hours for Age of Treatment: The Clinical, Social and Ethical Implications of Genetic Therapies. The American Board of Genetic Counseling (ABGC) will accept CEUs earned at this program for the purposes of genetic counselor certification and recertification. 

Successful Completion:
1. View recording
2. Pass quiz
3. Complete evaluation