Introduction to Genetic Counseling: Sickle Cell Trait and Sickle Cell Disease

Interested in learning about who genetic counselors are and what they do? Are you or do you know someone who is a carrier of sickle cell trait or has been diagnosed with sickle cell disease and have more questions? Watch this video of a simulated, abbreviated (shortened) genetic counseling session! It will cover key components of a genetic counselor's role in direct patient care and explain more about health complications associated with genetic changes that lead to sickle cell trait and sickle cell disease. 0:00 Intro 0:17 Contracting: Establishing patient goals and setting an agenda for the session. 1:46 Family History: Gathering information about patient and family health histories. 7:14 Patient Education: Assessing prior knowledge and providing education about basics of DNA and genetic inheritance of family conditions at the appropriate level. 10:16 Risk Assessment: Communicating the chances a patient has a genetic change and how this change can affect their health. 11:52 Facilitating Decision Making: Informing the patient of the risks and benefits of genetic testing and empowering them to make the best decision for themselves based on their values and beliefs. 14:07 Outro This scenario is based on real encounters and the lived experiences of patients and providers from underrepresented and historically excluded groups in healthcare.* Still have more questions? Want to learn more or connect with a genetic counselor? For more information about genetic counseling, visit: Minority Genetic Professionals Network, www.minoritygenetics.org National Society of Genetic Counselors, www.aboutgeneticcounselors.org For more resources about sickle cell trait and sickle cell disease, visit: SCDAA https://www.sicklecelldisease.org/ Sickle Cell Warriors https://sicklecellwarriors.com/ One SCD Voice https://www.onescdvoice.com/ Sickle Cell Society https://www.sicklecellsociety.org/ (in London) The Sickle Cell Transplant Advocacy and Research Alliance (STAR) www.curesicklenow.org This video was created by Liann Hoang Jimmons as part of degree requirements for a Master of Science in Genetic Counseling at Boise State University. Acknowledgments Committee members: Jennifer Eichmeyer, MS, CGC, Austin Bland, MS, CGC, and Esther Enright, PhD. The Minority Genetic Professionals Network, with special thanks to: Michelle Takemoto, MS, CGC, Damara Hamlin, MS, CGC, and Grace-Ann Fasaye, ScM, CGC. Peer contributors: Camille Miller and Elise Travis. *The patient and genetic counselor characters’ stories remained fictional and did not violate HIPAA guidelines as they were amalgams of multiple experiences and did not include any identifying private health information.