Genetic Testing; Conversation With A Researcher And Patient Advocate (HLOL #260) Health Literacy Out Loud podcast

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Genetic Testing; Conversation with a Researcher and Patient Advocate (HLOL #260)

28d ago 26:14

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Doris Zallen, PhD, is Professor Emerita of Science Studies and Humanities at Virginia Tech. Her research explores personal, family, and societal issues arising from advances in genetic testing and gene therapy. Zallen is the author of two books about genetic testing and is developing an online tool to help people make informed choices about testing. Zallen always draws from the experiences of genetic professionals along with everyday people making decisions about whether to have genetic testing.

Jamie Tyrone has been a patient advocate for many years after accidently learning that she has the gene that puts her at high risk for Alzheimer’s Disease. Ever since, Tyrone’s advocacy has taken many forms including as a research participant, co-author, and member of several professional committees. Tyrone wrote a book about her experience, Fighting for My Life – How to Thrive in the Shadow of Alzheimer’s.

Listen as Doris Zallen, Jamie Tyrone, and Helen Osborne discuss:

Genetic tests. What these tests are, why they often are used, ways to get tested within or outside of a clinical setting.
Jamie Tyrone’s story as an example of what went so wrong after having a direct-to-consumer genetic test and then learning the results.
How genetic test results can affect a person’s future health decisions, family, and finances.
Tips for making a reasoned choice about whether to get tested along with strategies to more clearly communicate about genetic testing.

More ways to learn:

Does It Run in the Family?: A Consumer’s Guide to DNA Testing for Genetic Disorders, by Doris Zallen, Rutgers University Press,1997.
To Test or Not To Test: A Guide to Genetic Screening and Risk, by Doris Zallen, Rutgers University Press, 2008.
Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s, by Jamie Tyrone, Harper Collins, 2019.
“Disclosing Individual Results in Dementia Research: A Proposed Study Participant’s Bill of Rights,” J Alzheimers Disease, 2022. By Walter S, Taylor A, Tyrone J, Langer S, Pagan J-R, Hummel CH, Wheaton BM, Zallen DT, Rosen AC.
AGREEDementia: Advisory Group on Risk Education for Dementia
“Return of Individual Results,” from the MRCT (Multi-Regional Clinical Trials) Center of Brigham and Women’s Hospital and Harvard.
Gene Test or Not? This online tool is designed to help decide whether or not to get tested for your genetic risk for late-onset Alzheimer’s disease. It spells out specific personal, family, and societal issues to consider when deciding about any particular form of genetic testing.

Health Literacy from A to Z: Practical Ways to Communicate Your Health Message, Third Edition, by Helen Osborne. The chapter “Decisions About Treatment, End-of-Live Choices, or Whether to Participate in Clinical Trials” is especially relevant to this podcast.

Read a transcript of this podcast.

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