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What are some practical benefits to learning about DNA?
Knowledge about the effects of DNA variations among individuals can lead to revolutionary new ways to diagnose, treat, and someday prevent the thousands of disorders that affect us. Besides providing clues to understanding human biology, learning about nonhuman organisms' DNA sequences can lead to an understanding of their natural capabilities that can be applied toward solving challenges in health care, agriculture, energy production, environmental remediation, and carbon sequestration.
For more details, see .
What are some of the ethical, legal, and social challenges presented by genetic information, and what is being done to address these issues?
The Department of Energy and the National Institutes of Health Genome Programs set aside 3% to 5% of their respective annual HGP budgets for the study of the project's ethical, legal, and social issues (ELSI). Nearly $1 million was spent on HGP ELSI research.
At least 18 countries have established human genome research programs. Some of the larger programs are in Australia, Brazil, Canada, China, Denmark, European Union, France, Germany, Israel, Italy, Japan, Korea, Mexico, Netherlands, Russia, Sweden, United Kingdom, and the United States. Some developing countries are participated through studies of molecular biology techniques for genome research and studies of organisms that are particularly interesting to their geographical regions. The Human Genome Organisation () helped to coordinate international collaboration in the genome project
Q. What are the potential benefits of human genome research?
The project will reap fantastic benefits for humankind, some that we can anticipate and others that will surprise us. Generations of biologists and researchers have been provided with detailed DNA information that will be key to understanding the structure, organization, and function of DNA in chromosomes. Genome maps of other organisms will provide the basis for comparative studies that are often critical to understanding more complex biological systems. Information generated and technologies developed are revolutionizing future biological explorations.
For details about the applications of human genome project research, see .
Click to see a poster depicting resources gained from Human Genome Project research.
The Human Genome Project (HGP) refers to the international 13-year effort, formally begun in October 1990 and completed in 2003, to discover all the estimated 20,000-25,000 human genes and make them accessible for further biological study. Another project goal was to determine the complete sequence of the 3 billion DNA subunits (bases in the human genome). As part of the HGP, parallel studies were carried out on selected model organisms such as the bacterium E. coli and the mouse to help develop the technology and interpret human gene function. The DOE Human Genome Program and the NIH National Human Genome Research Institute (NHGRI) together sponsored the U.S. Human Genome Project.
History of the Project
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: Major Events in the Human Genome Project
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(includes links to post-HGP publications)
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of HGP Goals and Corresponding Completion Dates
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of the U.S. Human Genome Project
- U.S. Human Genome Project Goals
Introduction
The Human Genome Project (HGP) is now entering into large-scale DNA sequencing. To meet its complete sequencing goal, it will be necessary to recruit volunteers willing to contribute their DNA for this purpose. The guidance provided in this document is intended to address ethical issues that must be considered in designing strategies for recruitment and protection of DNA donors for large-scale sequencing.
Nothing in this document should be construed to differ from, or substitute for, the policies described in the Federal Regulations for the Protection of Human Subjects [45CFR46 (NIH) and 10CFR745 (DOE)]. Rather, it is intended to supplement those policies by focusing on the particular issues raised by large-scale human DNA sequencing. This statement addresses six topics: (1) benefits and risks of genomic DNA sequencing; (2) privacy and confidentiality; (3) recruitment of DNA donors as sources for library construction; (4) informed consent; (5) IRB approval; and (6) use of existing libraries.
The guidance provided in this statement is intended to afford maximum protection to DNA donors and is based on the belief that protection can best be achieved by a combination of approaches including:
- ensuring that the initial version of the complete human DNA sequence is derived from multiple donors.
- providing donors with the opportunity to make an informed decision about whether to contribute their DNA to this project.
- taking effective steps to ensure the privacy and confidentiality of donors.
Benefits and Risks of Genomic DNA Sequencing
The HGP offers great promise for the improvement of human health. As a consequence of the HGP, there will be a more thorough understanding of the genetic basis of human biology and of many diseases. This, in turn, will lead to better therapies and, perhaps more importantly, prevention strategies for many of those diseases. Similarly, as the technology developed by the HGP is applied to understanding the biology of other organisms, many other human activities will be affected including agriculture, environmental management, and biologically-based industrial processes.
While the HGP offers great promise to humanity, there will be no direct benefit, in either clinical or financial terms, to any of the individuals who choose to donate DNA for large-scale sequencing. Rather, the motivation for donation is likely to be an altruistic willingness to contribute to this historic research effort.
However, individuals who donate DNA to this effort may face certain risks. Information derived from the donors will become available in public databases. Such information may reveal, for example, DNA sequence-based information about disease susceptibility. If the donor becomes aware of such information, it could lead to emotional distress on her/his part. If such health-related information becomes known to others, discrimination against the donor (e.g. in insurance or in employment) could result. Unwanted notoriety is another potential risk to donors. Therefore, those engaged in large-scale sequencing must be sensitive to the unique features of this type of research and ensure that both the protections normally afforded research subjects and the special issues associated with human genomic DNA sequencing are thoroughly addressed.
While some risks to donors can already be identified, the probability of adverse events materializing appears to be low. However, the risks of harm to individuals will increase if confidentiality is not maintained and/or the number of donors is limited to a very few individuals. Either, or both, of these situations would increase the possibility of a donor's identity being revealed without his/her knowledge or permission.
A final issue to consider is characterized in a statement taken from the OPRR Guidebook () which points out that "some areas [of genetic research] present issues for which no clear guidance can be given at this point, either because enough is not known about the risks presented by the research, or because no consensus on the appropriate resolution of the problem exists. It is anticipated that the DNA sequence information produced by the Human Genome Project will be used in the future for types of research which cannot now be predicted and the risks of which cannot be assessed or disclosed