Anticipating Enhancement: Ethical, Legal and Social Issues

NIH Sep 30, 1996 | R01

Anticipating Enhancement: Ethical, Legal and Social Issues

Principal Investigator(s): Juengst, Eric

Institution: CASE WESTERN RESERVE UNIVERSITY

FOA Number: N/A

Abstract

This project will delineate the major ethical, legal and social issues accompanying the use of genomic information to enhance normal traits in individuals and families, and to identify the precedents that best illuminate those issues for policy-making purposes. The study will use a traditional policy analysis approach to generate specific positions on five issues of genetic enhancement policy issues: 1) Do the human subjects of clinical research on genetic enhancement interventions require special protections? 2) How should the professionally acceptable limits of genomic services be drawn? 3) What constitutes fair access to genetic enhancement services? 4) How should genetic enhancement technologies be regulated? 5) How should support for research towards germ-line gene therapy be affected by genomics' genetic enhancement capacities?

FUNDING AGENCY:

Funder:
NIH

Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE

Funding Type:
R01

Project Number:
R01HG001446

Start Date:
Sep 30, 1996

End Date:
Jan 31, 1999

PROJECT TERMS:

behavioral /social science research tag, Ethics, Family Planning, genetic manipulation, Genome, health care policy, health care professional practice, health related legal, health services research tag, human data, Intelligence, Performance, Prenatal Diagnosis, sex determination, social desirability, sports medicine

Return to Search Results

Related Projects

R21

Exploring Choice of Law Challenges in Multi-Site Precision Medicine Research

Through the combined study of individual variation in genes, environment, and lifestyle, precision medicine research offers the potential for…
R21

Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM

Sexual and gender minorities (SGMs) experience significant disparities in health and health care. These inequities result from complex interactions…
R21

Using Ethics and User-Centered Design to Create Templates for EHR-Mediated Return of Genetic Test Results

Patient engagement is critical for implementation of the genomic component of precision medicine--with care taken to include the perspectives and…
R21

Demographic Patterns of Eugenic Sterilization in California

From the passage of the country's first sterilization law in Indiana in 1907 until the 1960s approximately 60,000 people were sterilized based…
R21

Developing and Evaluating Patient Centered Tools for Clinical Classification of Variants of Uncertain Significance

Targeted gene sequencing using large panels has become an increasingly important strategy for evaluating disease risk for many inherited diseases.…
R21

Genomics-based Technologies: Access and Reimbursement Issues

Genomics-based technologies are increasingly used in clinical care and are highly relevant to public health because of their potential use in…
R21

Preparing for Emerging Applications of Noninvasive Prenatal Testing

Noninvasive prenatal genetic testing, which utilizes cell-free fetal DNA and advances in sequencing technology, is revolutionizing the practice of…
R21

Assessing the utility of genomic counseling for common complex diseases

This application seeks to better understand the needs of patients undergoing genomic testing with respect to the understanding of an adaptation to…
R21

The impact of uncertainty in genome-wide testing for Autism Spectrum Disorder

Chromosomal Microarray Analysis (CMA) is a genome-wide technology that allows for identification of genomic alterations, such as deletions and…
R21

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…
R21

Return of Research Results from samples obtained for Newborn Screening

In order to maximize the potential benefit of research using newborn screening residual dried blood samples (DBS), a paradigm shift will be necessary…
R21

Returning Research Results of Pediatric Genomic Research to Participants

The specific aim of this project is to determine what criteria should govern return of individual results of pediatric genomic research, using…
R21

The Presumptive Case against Returning Individual Results in Biobanking Research

Genomic biobank research, like much scientific and biomedical research, aims to produce generalizable knowledge of collective benefit to humans and…
R21

Secondary Uses of Health Information: Patient Preferences for Sharing and Consent

Health information technology (HIT) is believed to be central to improving the quality and cost effectiveness of health care in the United States. As…
R21

Communicating Genetic Information for Obesity

Obesity rates in the United States have escalated in recent decades and present a growing challenge in public health prevention efforts. Advances in…
R21

Ethics and Public Attitudes Concerning the Use of Archived Biological Samples

Most discussion of the ethical challenges raised by the growth of research biobanks relies on the assumption that the only ethically relevant…
R21

Genetics Testing in Midwest American Indians

The goal of this two-year project is to uncover issues related to genetics testing among the Native American populations of the Midwest. A project of…
R21

Creating an initial ethics framework for biomedical data modeling by mapping and exploring key decision points

Project Narrative This study would be the first to develop an initial bioethics framework to meet a critical gap in biomedical data modeling…
R21

Exploring Choice of Law Challenges in Multi-Site Precision Medicine Research

PROJECT NARRATIVE The ability to recruit and protect research participants across multiple sites and multiple states is critical to the success of…
R21

Genetic Privacy and Identity in Sexual and Gender Minorities: GetPrISM

PROJECT NARRATIVE Very little research has been done regarding non-STI-related health disparities affecting sexual and gender minorities (SGM). Even…
R21

Social Determinants of Participation in Genetic Research among Puerto Ricans and in the Puerto Rican Diaspora

Puerto Ricans are especially at risk of experiencing distributive injustice, or the structural exclusion from participating in genetic research that…
R21

Ethical and Social Implications of In Vitro Gametogenesis

Project Narrative ?Ethical and Social Implications of In Vitro Gametogenesis? In vitro gametogenesis (IVG) is an emerging technology that involves…
R21

Integrating Nurse Champion Model for Group Reproductive Genetic Counseling for Sickle Cell Hemoglobinopathies into Primary Care: A Pilot Implementation Science Study

PROJECT NARRATIVE: Genetic counseling and health education are essential components of any early diagnosis program for sickle cell disease to ensure…
R35

Scalable tools to effectively translate genomic discoveries into the clinic

PROJECT NARRATIVE/ RELEVANCE OF PROJECT TO RESEARCH AND PUBLIC HEALTH Widespread utilization of genomic sequencing in medicine creates an urgent need…
R35

Scalable tools to effectively translate genomic discoveries into the clinic

PROJECT NARRATIVE/ RELEVANCE OF PROJECT TO RESEARCH AND PUBLIC HEALTH Widespread utilization of genomic sequencing in medicine creates an urgent need…
R01

Ensuring Patients' Informed Access to Noninvasive Prenatal Testing

PROJECT NARRATIVE The goal of this study is to study the effect of an evidence-based communication tool to support patients? decision-making about…
R01

Demographic Patterns of Eugenic Sterilization in Three U.S. States: Mixed Methods Investigation of Reproductive Control of the 'Unfit'

PROJECT NARRATIVE We will undertake epidemiological, historical and mixed-methods analysis of nearly 30,000 eugenic sterilization requests processed…
R01

Prenatal Preparation: Actions and Results

PROJECT NARRATIVE Preparation is often cited as a reason for offering and for accepting prenatal genetic screening and diagnosis. However, this term…
R01

Actionable Ethics Oversight for Human-Animal Chimera Research

PROJECT NARRATIVE Advances in genome editing, embryology, and stem cell science are making it possible to imagine, and create, new kinds of human-…
R01

The Ethics of Inclusion: Diversity in Precision Medicine Research

PROJECT NARRATIVE This study aims to analyze how diversity and inclusionary practices are conceptualized and operationalized by a range of…

Abstract

FUNDING AGENCY:

PROJECT TERMS:

Share

Related Projects

Newsletter