Ethical, Legal and Social Implications (ELSI) Research
The mission of the National Human Genome Research Institute (NHGRI) is to support and facilitate genomic research. The NHGRI began as the National Center for Human Genome Research in 1989 as part of the International Human Genome Project (HGP). The goal of the HGP was to sequence all 3 billion base pairs that make up the human genome. Since the completion of the HGP in 2003, the focus of the NHGRI “has expanded to encompass a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease”. Research conducted at the NHGRI has already made important contributions to our understanding of the human genome from the identification of disease causing genes to the creation of new bioinformatics tools for analyzing genomic sequence. The NHGRI also has a number of initiatives to increase public awareness and understanding of the field of genetics. Also, the NHGRI actively investigates the impact and incidental consequences of genomic research on individuals, families, and society through its Ethical, Legal and Social Implications (ELSI) Research Program.
ELSI is the world’s largest bioethics program, with approximately 3-5% of the National Institute of Health’s (NIH) annual budget going to this sector. The field of genetics has expanded rapidly in the past decade and has presented new ethical and policy issues. ELSI promotes education and helps to guide the way genetic research is conducted.
The research goals of ELSI are to:
* Examine and understand the complex issues surrounding human DNA sequence and genetic variation within humans.
* Examine how the health care system will be impacted by the integration of genetic information.
* Examine how gene-environment interactions will be affected in a non-clinical setting.
* Investigate how genetic information will shape already established views in philosophy, theology, and ethics.
* Investigate how genetic information will be used based on race, ethnicity, and socioeconomic factors.
Issues currently investigated by the ELSI program include insurance and employment discrimination, the timing and methods for integrating genetic information into the health care system, informed consent in research, and public education.
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