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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
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- 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
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ELSIcon2022 Flash: The Perspective on Healthcare Providers on the Return of Secondary Genetic Findings in Africa
ELSIcon2022 • Flash • May 27, 2022 Abimbola Oladayo, Sydney Prochaska, Tamara Busch, Lanre Adeyemo, Lord Jephthah Joojo Gowans, Mekonen Eshete, Waheed Awotoye, Azeez Alade, Adebowale Adeyemo, Peter…- return of results
- Genetic testing and screening
- Flash
- Pre-Recorded
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ELSIcon2022 Paper: The ELSI of Pandemic Biobanking
ELSIcon2022 • Paper • May 27, 2022 Sara Watson, Karen Meagher The objective of the Pandemic Research: Optimizing Technology and Ethics for Coronavirus Teams Implementing Novel Genetics (PROTECTING…- Attitudes about sharing biological samples and health data
- Biosafety
- Environment
- Paper
- Pre-Recorded
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ELSIcon2022 Paper: The 'Lived Experience' of Pediatric Gene Therapy - A Scoping Review
ELSIcon2022 • Paper • May 27, 2022 Laura Kimberly, Cara Hunt, Ryan Dieudonne, Alix Hall, Pat Furlong, Andrew McFadyen, Alison Bateman-House, Jennifer DeSante-Bertkau Little is known about patients…- Motivation to participate in research
- Gene therapy and gene editing
- Paper
- Pre-Recorded