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ELSIconversations ELSICon2022: Innovating Equitable Communication Modalities for Patient Activation and Cascade Testing for Familial Hypercholesterolemia
Co-Moderators: Nora Henrikson, PhD, MPH & Mildred Cho, PhD Presenters: Gemme Campbell-Salome, PhD, Kelly Morgan, LGC, & Eric Tricou MS, CGC Link to pre-recorded…- Familial Hypercholesterolemia
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ELSIconversations ELSICon2022: The All of Us Research Program: What Duties do Researchers Have When Conducting Precision Medicine Research?
Co-Moderators: Johanna Crane, PhD & Mildred Cho, PhD Presenters: Katherine Blizinsky, PhD; Subhashini Chandrasekharan, PhD; Sonya Jooma, MA & Rachel Bailey, ABD Links to…- precision medicine research
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Genetic Advantages in Sports: When Do They Count as "Doping"?
What is the essence of sports, and how does that impact the way doping is defined? The sports world is already preparing for an inevitable wave of "gene-doping" as gene-transfer technologies advance…- Doping In Sports
- Sports
- Genetic Enhancement
- genetic therapy
- Gene Transfer
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ELSIcon2022 Paper: Willingness towards re-use of donated biosamples for stroke genomic research among West African stroke patients and stroke-free individuals
ELSIcon2022 • Paper • May 27, 2022 Olorunyomi Olorunsogbon, Muyiwa Adigun, Babatunde R. Ojebuyi, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S. Sarfo, Lukman F. Owolabi, Rabiu Musbahu,…- Attitudes about sharing biological samples and health data
- global health
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: Whose future should we worry about?
ELSIcon2022 • Paper • May 27, 2022 Elisa Calleja When talking about genetic research, one of the goals is to successfully intervene in germinal cells and eliminate genetic diseases, so that…- Emerging technologies - public opinion and policy
- Gene therapy and gene editing
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: What I learned about sequencing from my critically ill daughter
ELSIcon2022 • Paper • May 27, 2022 Jill Robinson In 2017 my 7-month old critically ill daughter, Abby, along with my husband and I had trio exome sequencing. Doctors recommended testing to help…- return of results
- Incidental Findings
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: Toward an anthropology of rare disease
ELSIcon2022 • Paper • May 27, 2022 Meghan Halley, Colin Halverson, Marsha Michie Rare genetic diseases affect an estimated 330 million individuals worldwide. These patients often struggle to…- Lived experience of genetic conditions
- equity and justice in genetics
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: The need to consider a priori motivations and deterrents: A systematic review of elements influencing the consent process for genetic tests from the perspective of patients.
ELSIcon2022 • Paper • May 27, 2022 Frederic Coulombe, Anne-Marie Laberge Background: Consent for genetic tests is a well-established practice. Nevertheless, there is no consensus on what specific…- Uptake of genetic testing
- Genetic testing and screening
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: The definition and handling of genomic data in a digitalized society: A Japanese perspective
ELSIcon2022 • Paper • May 27, 2022 Jusaku Minari The development of genomic research increasingly contributes to the understanding, diagnosis, and treatment of various diseases, including…- Education and public reception of genetic science
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: The Role of Patient Advocacy Groups Following Prenatal Diagnosis of a Genetic Condition
ELSIcon2022 • Paper • May 27, 2022 Kaitlynn Craig, Marsha Michie, Kirsten Riggan Little research has been conducted to support the a priori claim that prenatal genetic testing is justified by the…- Genetic Counseling
- Paper
- Pre-Recorded