The Ethical, Legal, and Social Implications of Human Genetics Research (ELSI) program was developed to examine these issues and assist in the development of policy recommendations and guidelines to ensure that genetic information is used appropriately.
What does ELSI do?
ELSI provides a new approach to scientific research by identifying, analyzing and addressing the ethical, legal and social implications of human genetics research at the same time that the basic science is being studied.
What are ELSI of genomics?
The ELSI Research Program fosters basic and applied research on the ethical, legal and social implications of genetic and genomic research for individuals, families and communities.
When was ELSI established?
Ethical, Legal and Social Implications (ELSI) programs founded at NIH and DOE. The planners of the U.S. Human Genome Project (HGP) recognized that the information gained from mapping and sequencing the human genome would have profound implications for individuals, families, and society.
What are some ethical issues in human genetics?
Four general categories of ethical and social issues in genetic research studies are considered, including privacy, access and ownership of genetic information and materials, psychosocial risks of participating in genetic research studies, and potential group-related harms.
Who funds much of ELSI?
Results: Most ELSI research is independent of direct grant-based funding sources; 66% reported no such sources of funding. The National Human Genome Research Institute (NHGRI) is the most dominant source of funding; 16% of publications acknowledged at least one source of NHGRI grant funding.
What is the full form of ELSI in biology?
Introduction. As the National Human Genome Research Institute (NHGRI) moves toward a focus on translational research, the role played by research and policy activities that explore and address the ethical, legal and social implications (ELSI) of genetic research must be considered.
Who is called father of gene therapy?
French Anderson, MD, was “dubbed ‘the father of gene therapy’ after a team he led in 1990 cured a hereditary disease of the immune system in a 4-year-old girl.” That’s not quite the way it happened.
Who should access genetic information?
A clinical geneticist believes that if anyone is to own genetic information, it has to be all those who have inherited it and, more importantly, it must be available to all those who might be at risk.
What are the ethical implications of genome research?
When the genomic data are publicly accessible, there is a risk of discrimination during enrollment for a job or obtaining health insurance. Individuals could be denied a job or an insurance policy based on the genetic information which suggests the risk of susceptibility to any chronic disease or cancer.
What is an ethical concern around mutation in children?
The harm of such testing that has raised the greatest ethical concern is foreclosure of the child’s ability to decide for him- or herself about whether and when to be tested after reaching adulthood – an opportunity loss that is relevant since some adults who know they are at risk choose not to pursue testing.
What are the goals of human genome project?
Goals of the human genome project include:
- Optimization of the data analysis.
- Sequencing the entire genome.
- Identification of the complete human genome.
- Creating genome sequence databases to store the data.
- Taking care of the legal, ethical and social issues that the project may pose.
What are the negatives of the human genome project?
List of the Cons of the Human Genome Project
- It may cause a loss in human diversity. …
- It could develop a trend in “designer” humans. …
- Its information could be used to form new weapons. …
- It could become the foundation of genetic racism. …
- It would be most accessible to wealthy cultures.
What are 3 ethical issues with the Human Genome Project?
The original issues identified in the ELSI program announcement were: questions of fairness in the use of genetic information; the impact of genetic information on individuals; privacy and confidentiality of genetic information; the impact of the HGP on genetic counseling; the impact of genetic information on …
Why is the human genome project an ethical issue?
The misuse of genetic information represents a serious ethical problem. Most instances of misuse arise from violations of the confidentiality and privacy of genetic information.
What is an ethical concern with human genome selection?
Justice and Equity. As with many new technologies, there is concern that genome editing will only be accessible to the wealthy and will increase existing disparities in access to health care and other interventions.