Tay-Sachs disease, screening and prevention : based on the First International Conference on Tay-Sachs Disease, Screening and Prevention, Palm Springs, California / editor, Michael M. Kaback ;ssociate editors, David L. Rimoin, John S. O'Brien.

  • International Conference on Tay-Sachs Disease: Screening and Prevention 1975 : Palm Springs, Calif.)
Date:
1977
Catalogue details

Licence: Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)

Credit: Tay-Sachs disease, screening and prevention : based on the First International Conference on Tay-Sachs Disease, Screening and Prevention, Palm Springs, California / editor, Michael M. Kaback ;ssociate editors, David L. Rimoin, John S. O'Brien. Source: Wellcome Collection.

    445/458 (page 425)
    DISCUSSION Chase (Baltimore) : Speaking only as an individual statistician and not a repre¬ sentative of the information-handling community, I have a lot of reservations about the kind of registry that was just presented. I would like to make it clear that there are at present, and might be in the future, significant reasons why information-handling professionals might refuse to participate in designing or doing research on registries that contain identifying information on particular subjects. The first such reason would be that there are a lot of government- related research projects that essentially would be carried out differently de¬ pending on whether information-processing personnel had, or did not have, access to identifying information on individual subjects. There might be certain situa¬ tions in which I, or other people like me, would be reluctant to do legitimate scientific work on such a file because of the legal and grant complications that could occur because the files contain identifying information. The second issue is that statisticians and other information-handling people are getting increas¬ ingly concerned about the possibility that they may have endangered legal status because of participating in the use of files which contam such identifying infor¬ mation. Third, for something like Tay-Sachs screening, I'm wondering about what might be lost if identifying information is eliminated from the design of the registry? All other factors, such as results of the tests, the place it was done, and so on and so on, are retained so that in the actual location of the registry everything is preserved except the identity of the person who is screened. Schneck (Brooklyn) : When you design a security system into a computer, one of the problems you really should face is that it costs money to design that sys¬ tem. How secure is the information if it is not put on computer? Besides the ob¬ vious answer that most of us maintain files in offices which can be easily broken into, there's another problem which actually reduces the sensitivity and the security of all genetic information, and certainly of that on Tay-Sachs disease. We all are aware that when a child is hospitalized there are third-party agencies - local, state, and federal governmental agencies and insurance companies — who immediately have access to that information, and they can be identified. The question, therefore, is whether anyone would deliberately go to the trouble (and it can be a very costly problem in a properly designed security system) to gain access to that type of information, when it is so much easier to gain it through obvious open registries. Another point is that if you're going to remove identi¬ fying data from a central registry, you defeat what to me is one of the main purposes of screening, that is, to find, with a high probabihty and minimal cost, the couple or individual at-risk. This means family screening, and the only way you're going to be able to do that is if you have information on the pedigree of the family at-risk. We're all concerned about security after our experience with Watergate, the 1RS, etc., but we should not let our instinctual disHke of com- Tay-Sachs Disease: Screening and Prevention, pages 425—428 © 1977 Alan R. Liss, Inc., New York, N.Y.