ELSI

Ethical, Legal, and Social Implications of the Human Genome Project

Database Access.

Access to the database of funding awards is provided by the following links. They may be viewed from a variety of entry points, such as the principal investigator or the general ELSI area. Entry points are still being added and will be added as the need arises or an idea appears.

• General ELSI areas (Ethical, Legal , and Social Implications . Since ELSI is partitioned into three main areas, each of the projects is grouped under the three general headings. Within the general categories are specific subject areas listings. For example, projects related to women, projects related to technology, projects related to counseling or crime and forensics are listed together along with other such groupings. If you are seeking something in particular, this is a good place to start. There will be overlap because many projects target more than one area, such as education and technlogy or cancer and women or legal and ethical, etc.
  
  
• Documents published by NIH beginning with the announcement of ELSI along with copies of the several NIH 5 year plans for the Human Genome Project. There is also one page that contains only the ELSI portions of the plans which provides a concise history of ELSI that will be used as a standard for evaluating the results of policy execution. In February, 2000 a report reviewing the ELSI program (NIH and DOE) was released. It is available in PDF format here.
  
  
• Other activities. ELSI has not only given money to researchers for their own projects. Money has been spent on committees, task forces, legislative efforts, etc. NIH has established four areas that are considered high priority. These are:
  

  1. Privacy and Fairness in the Use and Interpretation of Genetic Information
     
  2. Clinical Integration of New Genetic Technologies
     
  3. Issues Surrounding Genetics Research
     
  4. Public and Professional Education.

  
  
  
• Principal Investigators (PI). This is an alphabetical list of the people who recieved money for a project or study. Each entry has the name of the PI, the name of their institution and the name of the grant. Email and home page information is provided when available. All the grants for each PI are listed if more than one grant was awarded. There are 150 for NIH.
  
  
• Titles of awards. This a list of the titles of all the NIH grants in grant number order linked to the abstract. There are 147 funded by NIH and 19 co-funded by NIH and other agencies.
  
  
• Check list. Grants listed by year with publication (Yes/No), grant number, funding amount, category.
  
  
• No money list. List of grants for which the money given was not avalailable.
  
  
• Videos. Besides the publication of books, journals and study results, a number of educational video tapes have been produced. The distribution channels have been network television, satellite courses, and as part of an educational package.
  
  
• Conferences. ELSI has supported professional conferences since the beginning. This is a set of links to all the conferences, workshops and seminars.
  
  
• Awards by year. This link lists the years, each year link page lists the projects for the given year.
  
  
• Funding profiles. The funding profile page is a summary of the money spent by various categories, by year for example.
  
  
• NIH Shannon awards. Funds are given out as James A. Shannon Director's Awards to special projects each year. James Shannon was the director of NIH from 1955-1968. According to NIH:

  "A Shannon award provides partial support for the research projects that fall short of the assigned Institute's funding range but are in the margin of excellence. The Shannon award is intended to provide support to test the feasibility of the approach; develop further tests and refine research techniques; perform secondary analysis of available data sets; or conduct discrete projects that can demonstrate the PI's research capabilities or lend additional weight to an already meritorious application."

• The Department of Energy ELSI section is still under construction, but there is some information available.