Philip J. Reilly, Dorothy C. Wertz, Robin J.R. Blatt.[1]
The Shriver Center for Mental Retardation, Division of Social Science, Ethics and Law, 200 Trapelo Road, Waltham MA 02254.
We propose to develop a newsletter on ELSI-related issues for dissemination to a broad general audience of professionals and consumers. No such focussed public newsletter currently exists. Entitled The Gene Letter, the newsletter will be distributed monthly on-line, through the Internet. Updated weekly on the Internet, it will be poised to react in a timely fashion to new developments in science, law, medicine, ethics, and culture. The newsletter does not propose to provide comprehensive education in genetics for the American public, but rather to begin an information network that interested people can use for further information. It will be the most widely-distributed newsletter on ELSI genetics in the world, with the largest consumer readership. Features will be largely informational and will include new scientific/medical developments and attendant ELSI issues, new court decisions, legislation, and regulations, balanced responses to new concerns in the media, and new developments related to health that may be of interest to health care providers and consumers. Features will present balanced opinions. An editorial board will review each issue, prior to publication, for cultural sensitivity, emphasis, balance, and concerns of persons with disabilities. The Gene Letter will also include factual information on upcoming events, new ELSI research, where to find genetics on the Internet, new publications (annotated), and where to find further information about each feature. Readers will be invited to send letters, queries, news, bibliography, comments, and consumer concerns either on The Gene Letter Internet chatroom or in hard copy. A hard copy of the first on-line issue will be used to assess readers' needs and interests. It will be distributed to 500 community college students representing blue-collar ethnic groups, and to 2000 members of a broad general audience.
A special evaluation of readers' knowledge and ethical/social concerns raised by The Gene Letter will take place at the end of the second year in order to assess outcome. It is our intention that The Gene Letter become self-supporting after two years.
Grant Acknowledgment
*Supported by a grant from the Department of Energy, Ethical, Legal, and Social Implications of the Human Genome Project.
[1] Massachusetts Department or Public Health, Boston, MA