Correspondence

The Human Molecular Genetics Network

N Engl J Med 1995; 333:1573December 7, 1995

Article

To the Editor:

With regard to your editorial on the Internet and the Journal (June 22 issue),1 the availability of biomedical services on the Internet promises to change many aspects of contemporary medicine. The Human Molecular Genetics Network (e-mail address: HUM-MOLGEN@nic.surfnet.nl; Web page: http://www.informatik.uni-rostock.de/HUM-MOLGEN) was set up a year ago to permit the rapid exchange of information in the field of molecular genetics. Subscriptions for this free service now exceed 1500 and are growing at a rate of approximately 1 percent per week. About 50 percent of the subscribers reside in the United States. The network has so far provided a forum for an exchange of information about collaboration, reagents, specimens, the availability and location of laboratories offering specific diagnostic tests and Internet resources, as well as for the discussion of ethical, technological, and legal issues pertaining to human genetics. Documents in the form of reviews and preliminary abstracts can also be posted. Since rare diseases are frequently studied in this field, the widespread dissemination of information (on materials, resources, and so forth) has proved very useful in many cases.

We share your belief that medically relevant information has to be handled differently from physics. At the Human Molecular Genetics Network, we are aware of this aspect. Indeed, the list is monitored, and new messages are reviewed by at least one of us. Patients' requests for information (which have been rare so far) are reviewed with special care. Such a request, if considered relevant to molecular genetics, is transmitted to the network without the patient's address. This policy allows us to examine all replies before transmitting them back to the patient and to block those deemed scientifically incorrect. In cases in which the reply could be psychologically devastating to the patient, we contact the patient and try to deliver the information through his or her physician. In our opinion, this policy will diminish (although not eliminate) the chance of spreading inaccurate and damaging information. We believe that the rapid exchange of information is vital, however, and services such as the Human Molecular Genetics Network provide such an exchange without supplying any direct diagnostic information or counseling.

We also welcome your decision that electronic distribution will not be regarded differently from other types of publishing. We expect that the posting of a preliminary abstract at a meeting or on the Internet will not preclude subsequent publication of the final results of the work.

Carlo Gambacorti-Passerini, M.D.
Istituto Nazionale per lo Studio e la Cura dei Tumori, 20133 Milan, Italy

Jurg Ott, Ph.D.
Columbia University, New York, NY 10032

Arthur Bergen, Ph.D.
Netherlands Ophthalmic Research Institute, 1100 AC Amsterdam, the Netherlands

1 References