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Grant Abstract
Cost-effectiveness of Whole Genome Sequencing of Healthy Adults
Whole genome sequencing has vast potential to improve the care of generally healthy adults by identifying predispositions for disease to facilitate targeted prevention and screening efforts, by…- Adult
- Area
- base
- behavioral response
- Benign
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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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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,… -
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
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Grant Abstract
Challenges of Informed Consent in Return of Data from Genomic Research
Genomic data, including findings incidental to the purpose for which a study is undertaken, can contain information of use and importance to research subjects related to their health, lifestyle, and…- Access to Information
- Address
- Adverse effects
- adverse outcome
- Alzheimer's Disease
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Grant Abstract
Addressing Ethical Challenges in Networked Biorepositories
Individual institutions across the country have worked to support research in a wide variety of areas, including precision medicine research, by developing large biorepositories comprised of…- American
- Area
- Authorization documentation
- biobank
- Biological
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Grant Abstract
Trans/Forming Genomics: Guidance for Research Involving Transgender and Gender Diverse People
PROJECT NARRATIVE The recent explosion in biobanking, more routine collection of data on gender identity, and rapid expansion of research in transgender and gender diverse (TGD) populations has…- gender affirmation
- gender diversity
- gender expression
- polygenic risk score
- precision medicine
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Grant Abstract
Research, Treatment and Informed Consent in Gene Therapy
This project is designed to analyze the adequacy of the Belmont Report's distinction between research and treatment as a basis for informed consent policy especially as it pertains to gene…- behavioral /social science research tag
- Clinical Research
- Decision Making
- gene therapy
- health care policy