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Video
Autism Genomics Research: Parents’ Views on Genetic Results and Autistic Representation
ELSI Friday Forum • March 11, 2022 Decades of research into the genetics of autism suggest that genes play a significant but also complex role in autism. Studies of the experience of families…- autism
- autistic representation
- autistic genomics research
- genetic diagnosis
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Video
Ensuring Equitable Use of New Genetic Technologies: Lessons from Eugenics
ELSI Friday Forum • January 14, 2022 New genetic technologies have incrementally but steadily altered the landscape of human reproduction. These technologies include polygenic risk scores coupled…- genetic technologies
- equitable access
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Video
ELSIcon2022 Flash: Genetic Attribution and Felt Stigma in People with Epilepsy
ELSIcon2022 • Flash • May 27, 2022 Ruth Ottman, John B. Wetmore Among people with epilepsy, felt stigma remains common and significantly impacts quality of life. In our previous study of families…- Stigma and discrimination
- Genetic testing and screening
- Flash
- Pre-Recorded
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Video
Race, Ethnicity, and Ancestry (REA) in Clinical Genetics: Variability in Collection and Use
Hannah Wand, MS, CGC ADWG ELSIconversations Session 1 - April 29, 2022 Question: How is information about patient race, ethnicity, and ancestry on clinical laboratory requisition forms used…- Race and Ethnicity
- ancestry
- clinical genetics
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Video
ELSIcon2022 Paper: Challenges in Providing Genetic Risk Information to At-Risk Relatives of Patients Who are Deceased: Experiences of the Genetic Risk Analysis in Ovarian Cancer (GRACE) Study
ELSIcon2022 • Paper • May 31, 2022 Sandra Soo-Jin Lee, Jessica Martucci, Yolanda Prado, Tia Kauffman, Larissa White, Nora Henrikson, Heather Feigelson, Jessica Hunter Current guidelines…- Live
- Paper
- Disclosure of genetic risk information to relatives
- Genetic testing and screening
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Video
Affirming Sex and Gender Diversity in Genetics Practices, Policies, and Laws: A Call to Action
This ELSI Friday Forum took place on December 8, 2023. There are already many barriers to appropriate health care for transgender, gender diverse, and intersex (TGDI) communities. The recent surge…- gender diversity
- gender/sexuality
- Biomedical policy
- genetics and law
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Video
An Exploration of Family Connection and African Ethnic Identity Development Among African Americans Finding African Genetic Relatives While Using Consumer Genetic Genealogy Services
ELSIcon2022 • Pre-recorded Flash LaKisha David, PhD - University of Pennsylvania, Postdoctoral Fellow An Exploration of Family Connection and African Ethnic Identity Development Among African…- identity
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Video
Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions
This ELSI Friday Forum took place on September 8, 2023. Since application of the first individualized therapy in 2019, development of these bespoke treatments has expanded rapidly. Individualized…- Ultrarare Diseases
- N-of-1
- Individualized Therapies
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Video
Direct-to-Consumer Genetic Testing: Public Perspectives and Considerations Regarding Ancestry and Kinship
Catherine Hammack-Aviran, MA, JD - Vanderbilt University ELSIconversations - April 2, 2021 Direct-to-consumer (DTC) genetic testing is transforming how people view their individual, familial, and…- direct-to-consumer genetic testing
- ancestry
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Video
How Race, Ethnicity, and Ancestry Information is Used in Genetic Diagnostics: One Lab's Perspective
Dee McKnight, PhD ADWG ELSIconversations Session 2 - May 6, 2022 Question: What is the most important information, conceptually, for clinical genetics professionals to do their jobs…- Race
- Ethnicity
- ancestry
- genetic diagnosis