This thesis investigates the results of the formal expenditure of federal funds built into the Human Genome Project (HGP) to address ethical issues. This part of the HGP is known as ELSI, the Ethical, Legal and Social Implications of the HGP. It represents the first such attempt to investigate the social consequences of science as part of the development process. We have numerous examples of after the fact ethical work, such as the the reaction by scientists following the destruction of Hiroshima and Nagasaki during World War II by the use of nuclear weapons, but ELSI is the first such funding which was included from the beginning of a large scientific project.
The funding of ELSI was in place from the earliest days of the HGP about ten years ago, making a decade evaluation useful. In fact, a conference reviewing the first ten years of ELSI, sponsored by NIH, was scheduled for January 2001 in Bethesda Maryland.
Funding for the HGP is largely from the Department of Energy (DOE) and the National Institutes of Health (NIH) making the information publicly available, although not always trivial to obtain. The total amount of money for ELSI ranges between three and five percent of the annual budget of the HGP. This study will evaluate the expenditure of the NIH ELSI funds by looking at original proposals and abstracts used in applications for ELSI funding which were successful. The amount of money for each project and the outcomes of each project have been compiled. From this data emerges the patterns of what the money was used for and how well it was used. Outcomes can be journal articles, books, educational video tapes, government regulations, studies, workshops, conferences or web sites.
The compiled data reveals patterns of recipients, for example during one period cystic fibrosis may have received a larger share of funds than cancer studies. Another pattern is the outcomes in the three major areas of ethics, legal and social implications. As an example, has the legal profession achieved more with its share of funds than ethics? And what percent has been distributed to each area?
Some of the larger questions have important implications for the future of science. Has the investment in ethics for publicly funded science made a difference in a financial sense and/or in a social responsibility sense? Should this model be adopted as a standard part of science? Was the money spent on conferences or journal articles with no real value? Perhaps the outcomes were as good as they should have been, so that from now on such funding will be mandatory for science.
The study was conducted by a search of the NIH web site where a list of ELSI awards and abstracts resides. The list and abstracts were copied to a local computer, creating a file for each award which included the PI, the grant title and the abstract. The funding for each grant was found by a search of the NIH CRISP database.
Each of the grants was then classified into one or more of the three ELSI areas (Ethical, Legal or Social), followed by further breakdown into sub-areas where it seemed to make sense. Since the funding of the Social Implications area is about three time the size of the Ethical Implications and Legal Implications combined, it was an obvious place to subdivide. The criterion used for classifying an award was based on the title and abstract submitted by the principle investigator. Abstracts generally provided a goal or outcome along with related ideas that fit into one of the three general areas and into subareas. The subareas were created based on the studies themselves and were not predetermined.
After classifying all the grants, the number per year for each area, along with the funding, was tallied. Once the tables were created and compared, patterns were easily identified. The patterns were then correlated with the actual events and history of ELSI to produce this work.
Examples of actual events are:
- Events that took place inside of NIH (eg: change of leadership)
- Publications resulting from each of the grants
- Literature in scientific journals relating to ELSI
- Changes or attempted changes in government policy or the legal arena
This study provides a description of the first ten years of ELSI as directed by government funding. Conclusions of the influence are drawn from the data and the responses by scientific community. The response of the general public is a topic for another study, but in general, the public seems unaware of ELSI, in spite a number of the issues making it into the public consciousness. This work is limited in scope and is not a complete review of ELSI. It looks at the abstracts submitted to NIH in application for funding that were successful in obtaining funding. The list is finite, totaling 166 abstracts. These abstracts were categorized into the three main Implication areas that make up the phrase ELSI, then subdivided within the main areas. The funding, as could be determined by availability, was tabulated by category. This was followed by listing the known publications and outcomes which were a result of each project. With the additional data of Principal Investigators (PI), a view of the actual events emerged minus any public relations aspects to impress funding agencies. None of the outcomes was evaluated to determine whether or not the money was well spent, although that would a good topic for another study.