23) In spite of a huge presence of Internet-leveraged clinical studies and the improvised and sometimes anarchic ELSI
they may introduce, these studies have not received much (if any) formal attention in the ELSI
There are many ethical, legal and social issues at play that will require guidance and expertise from CGP to ensure CCRM has considered all of the ELSI
implications associated with this work.
James Watson was appointed the Director of the HGP in 1988 and determined that the project would set aside funds specifically to study the ELSI
issues arising under the HGP, openly explaining that the intent was to reassure a public concerned with the increasing reach and power of science.
Issues of the validity of an instrument such as ELSI
require continued scrutiny, but the extensive tests that have been made give support for the conclusion that it is valid, reliable, versatile (being able to be used in a wide range of contexts and for a variety of purposes) and robust (permitting, for example, valid comparisons between sub-populations distinguished on the basis of age, parenting status and ethnicity).
However, in a world where the biomedical research environment is becoming increasingly commercialized, the role of the independent ELSI
scholar seems particularly important.
NSF has recently funded quasi-experiments in face-to-face and Internet-mediated citizens' panels, and the Nanotechnology Research and Development Act endorses the use of such panels, among other outreach techniques, to inform the National Nanotechnology Initiative (an arrangement that also connects ELSI
We found the symposium to be a grand historic event and the science to be excellent, but there appeared to be a collective disappointment among ISONG attendees that the ELSI
issues did not find a more significant place in the program.
Early on, ELSI
seemed an enlightened effort at reconciling the excitement of basic science with the gravity of its social implications.
In that vein, some of the questions ELSI
will address are very fundamental, says Mathios.
Characteristically, bioethicist Eric Juengst, formerly the director of the ELSI
program and now at Case Western Reserve, denounces the new paternity tests and asks, "what is the benefit to the child and society of seeking this information?
The National Institutes of Health committed 5% and Department of Energy allocated 3% of their respective HGP budgets to not only identifying ELSI
issues, but to educating health care professionals and the public about genetics and ELSI
considerations (Truesdell-Smith & Bartels, 1993) as well as funding numerous research and educational projects (U.
Anecdotal evidence collected by the ELSI
working group, private researchers, and genetic support groups bolsters the claim that people who carry genetic anomalies may face discrimination in getting and keeping jobs and insurance.