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Screening Embryos for Psychiatric Conditions: Public Perspectives, Ethical and Social Issues
The number of genomic loci identified to be associated with psychiatric disorders have substantially increased over the last decade. Alongside developments in polygenic embryo screening (PES; or PGT-…- polygenic embyro screening
- Polygenic risk scores
- Psychiatry
- Reproductive Decision Making
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Video
ELSIcon2022 Paper: When State Laws Conflict: Choice of Law Challenges in Multi-Site Research
ELSIcon2022 • Paper • May 31, 2022 Laura Beskow, Leslie Wolf Our previous research demonstrated that precision medicine research implicates numerous state laws, including human subjects…- Live
- Paper
- Laws and research sites
- precision medicine
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Grant Abstract
Data Release Policies for Genomics: Legal and Ethical Issues
A significant number of NIH-funded projects are under the jurisdiction of an explicit data release policy. Such projects include: any project with direct costs of more than $500,00 per year, any…- Communities
- confidentiality
- Confusion
- Consent
- Data
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News
Special Issue Call for Papers: Envisioning a More Just Genomics
Deadline Extended: April 7th, 2023 at 11:59 EST The Center for ELSI Resources and Analysis (CERA) and The Hastings Center are sponsoring a special issue of the Hastings Center Report that looks…- call for submissions
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Grant Abstract
An ELSI-Integrated Evaluation of the Family-Level Utility of Pediatric Genomic Sequencing
PROJECT SUMMARY/ABSTRACT Substantial resources have been devoted to policy evaluation of clinical genomic sequencing that hinge on the conceptualization and measurement of utility. However, most… -
Grant Abstract
Demographic Patterns of Eugenic Sterilization in Five U.S. States: Mixed Methods Investigation of Reproductive Control of the 'Unfit'
PROJECT NARRATIVE Between 1907 and the mid-1970s, 32 US states passed and implemented eugenic sterilization laws that authorized the sterilization of people considered unfit. Our epidemiological,… -
Video
ELSIcon2022 Flash: What Led to the Abolition of Iowa’s State Eugenics Program in 1977?
ELSIcon2022 • Flash • May 31, 2022 Bridget Easler, Breanna Rinker, Alexandra Minna Stern, Elyse Thulin, Nicole Novak Iowa’s Board of Eugenics (BoE), which oversaw the sterilization of 1,910…- Live
- Flash
- Eugenic sterilization in the 20th century
- Race, disability, and gender studies
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Video
ELSIcon2022 Late-Breaking: Impact of a direct-to-consumer (DTC) report on Alpha-1 antitrypsin deficiency (AATD) risk on clinical diagnosis of disease and on self-reported behaviors
ELSIcon2022 • Networking Session • Late-breaking Abstracts • June 2, 2022 Sarah Elson Background: Alpha-1 antitrypsin deficiency (AATD) is an autosomal co-dominant condition that predisposes…- Live
- Networking Session
- Late-breaking Abstracts
- precision medicine
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Grant Abstract
Community Consultation as an Ethics Method
Over the past decade researchers, institutions and research sponsors have engaged in various forms of discourse with minority and indigenous populations in the US and abroad. These "community…- behavioral /social science research tag
- Clinical Research
- community health services
- data collection methodology /evaluation
- Ethics
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Grant Abstract
Engaging Tribal Participation in Research through Priority Setting and Regulation
The recruitment of American Indians and Alaska Natives (AI/AN) to participate in research is complicated by a long and troubled history between researchers and Native populations of the United States…- Alaska
- Alcohols
- American Indian and Alaska Native
- American Indians
- Area