"The Seamless Web" and the End of Privacy 

A White Paper by Kathleen O'Connell-Sundaram

2/8/97


  In his letter to Hillary Clinton on November 12, 1992 (page eight) Mr. Marc Tucker made the following statement:  Everything that follows is cast in the frame of strategies for bringing the new system into being, not as a pilot program, not as a few demonstrations to be swept aside in another administration, but everywhere, as the new way of doing business.  He goes on to state in the section entitled "Organizing the Executive Branch for Human Resources Development...  The issue here is how to organize the federal government to make sure that the new system is actually built as a seamless web in the field, where it counts, and that program gets a fast start with a first-rate team behind it. The seamless web that Mr. Tucker may in fact be addressing is that of the no-boundary web known as the Internet and the government's plan to expand its usage for massive data retrieval, cataloging in relational databases, and dissemination for its plan centralized expanded social welfare state. One does not need to reach this conclusion by means such as a conspiracy theory. One only needs to read the words of those overseeing the development of the venture. This Administration is advancing well-publicized programs of national healthcare, centralized labor planning, government-business-nonprofit partnerships to advance the social infrastructure. Nothing about these plans actually advance the progress of the individual. In fact this paper is intended to demonstrate that this government is attempting to rob the individual of his inalienable human rights to self determination and the pursuit of his own liberty, life and happiness for himself and his posterity as was the intention of our forefathers. This will be done via the "seamless web" through the electronic breech of privacy through the schools, job market and health care sector if the Clinton Administration plans advance any further. 

 The term "seamless web" is found throughout the Internet and literature in the pages of the Information Infrastructure Task Force (http://www.iitf.nist.gov/ipc/ipc/ipc-pubs/niiprivprin_final.html). In the article PRIVACY AND THE NATIONAL INFORMATION INFRASTRUCTURE: PRINCIPLES FOR PROVIDING AND USING PERSONAL INFORMATION by the Privacy Working Group Information Policy Committee Information Infrastructure Task Force, Final Version dated June 6, 1995 introduction, they state:   The National Information Infrastructure ("NII"), with its promise of a seamless web of communications networks, computers, databases, and consumer electronics, heralds the arrival of the information age. The ability to acquire, process, send, and store information at an acceptable cost has never been greater, and continuing advances in computer and telecommunications technologies will result in ever-increasing creation, use, and storage of information.  The NII promises enormous benefits. To name just a few, the NII offers the possibilities of greater citizen participation in deliberative democracy, advances in medical treatment and research, and quick verification of critical information such as a gun purchaser's criminal record. These benefits, however, do not come without a cost: the loss of privacy. Privacy in this context means "information privacy," an individual's claim to control the terms under which personal information--information identifiable to an individual--is acquired, disclosed, and used.  The NII calls for a collaborative efforts of the various departments of the Executive branch and their budgets to further the expansion of the seamless web. Specifically, the National Research and Education Network and the NII in general is being designed to:  widen the research and education community's access to high performance computing and research centers and to electronic information resources and libraries. This will accelerate the development and deployment of networking technologies by the telecommunications industry: BRHR (Basic Research and Human Resources) -- This element supports research, training, and education in computer science, computer engineering and the computational sciences and enhance the infrastructure through the addition of HPCC resources. Initiation of pilot projects for K-12 and lifelong learning will support expansion of the NII… IITA (Information Infrastructure Technology and Applications) -- Its purpose is to demonstrate prototype solutions to National Challenge problems using HPCC enabling technologies. This will support integrated systems technology demonstration projects for critical National Challenge applications through development of intelligent systems interfaces. These will include systems development environments with support for virtual reality, image understanding, language and speech understanding, and data and object bases for electronic libraries and commerce.  (Taken from J. H. Gibbons Testimony on Information Infrastructure, From: Clinton-HQ@Campaign92.Org (The White House) Date: 28 Apr 1993 00:57:58 -0400)  Included in the NII plan are the following departments but not limited to Education, Energy, NASA, National Science Foundation, ARPA, National Institute of Health, NSA and VA. In addition, the government, local government agency and nonprofit grant-making process with regard to the NII insists on the interactive linking between other organizations that are not obviously linked in their missions. Many programs such as the U.S. Department of Health and Human Services' Comprehensive Community Mental Health Services for Children "Caring for Every Child's Mental Health: Communities Together Campaign" http://www.mentalhealth.org/child/CCMHSE.HTM extend the collaborative effort to state and local government entities including the schools. According to the fact sheet at this web site, "A goal of the Comprehensive Community Mental Health Services for Children Program is to improve the delivery of mental health services and supports to children and adolescents with serious emotional disturbances and their families who need help from more than one service system." It goes on to explain:   Authorized by Congress in 1992, the Comprehensive Community Mental Health Services for Children Program provides Federal funds through demonstration grants to States, communities, and Native American tribes. In 1995 Congress appropriated $60 million for these grants to improve the delivery of mental health services through "systems of care." The program currently administers 22 Federal grants in 29 communities in 18 states to implement, enhance, and evaluate local systems of care. All grantees are required to match Federal dollars with local and State monies on an increasing level throughout the 5-year life of the grant. These grant projects coordinate systems of care involving mental health, child welfare, education, juvenile justice, and other local public and private agencies. Each project provides services that were underdeveloped or nonexistent in most communities, such as intensive family-based services, respite care, day treatment, clinic- and school-based services, crisis outreach services, therapeutic case management, therapeutic foster care, and diagnostic and evaluation services.  Also noted at the fact sheet web site for the CMHS Data Collection Center for Mental Health Services (http://www.mentalhealth.org/emerserv/fact97.htm )  "data collection activities are carried out through the National Reporting Program (NRP) for Mental Health Statistics operated by the Survey and Analysis Branch, Division of State and Community Systems Development….The MHSIP is designed to improve the quality of mental health program and services delivery decision making at all levels through guidance and technical assistance on the design, structure, content, and utilization of mental health information systems. Data standards for uniform, integrated mental health data collection have been developed. Special grant announcements have been used to solicit competitive grant applications from the State mental health agencies for implementation of the data standards of the MHSIP and competitive grant applications for improvement of State mental health agency analytical capacity."  These programs translate locally into programs such as the "Early Mental Health Initiative E.M.H.I.-96 in the Union School District, San Jose, California. This Primary Intervention Program is administered by the State following the guidelines for reporting and issues such as "cultural competence. "Cultural competence" is a critical goal in the systems of care approach. It requires that the policies and practices of each agency to address the impact of and show respect for the race, culture, and ethnicity of the children and families they serve," outlined in the Comprehensive Community Mental Health Services for Children Program. The Union School District program is a cooperative venture with the State Department of Mental Health, Catholic Charities, and the school district itself. It is difficult very difficult to track where the data goes and if in fact it has ended up in a database that can be accessed again in the student's future. The directions given by the data collection service Duerr Evaluation Resources under contract to the California Department of Mental Health in its 1996/97 Guide to Collecting and Reporting Early Mental Health Initiative Data page 5 for the instructions regarding "Student ID#" follows.  The Student ID#" field requires a self-generated identification number be filled in for the student. The "STUDENT ID# IS REQUIRED AND MUST BE RECORDED ACCURATELY. Because data collection forms are designed to ensure confidentiality, the forms do not require person identifiers such as student name or birth date. Therefore, THIS IDENTIFICATION NUMBER IS CRUCIAL FOR THE PURPOSE OF DATA PROCESSING. This Student ID# number provides the linkage for all student information: WSI, WMS, and PDI. A separate form, the Student Identification Numbering Log" (see pages 28-29) has been created to assist paraprofessionals in assigning ID#s to students and in creating a permanent record of the numbering system for future use.   It would lead a prudent person questioning how permanent the record is and for what future use. Is the parent fully informed with this aspect of the process?

 The data communications research community has contributed to laying the backbone work for the web infrastructure. While the Administration has in fact expanded the scope of the federal government, they dutifully state again and again that they are increasing the efficiency and cutting the paperwork. 

 Pacific Bell designed several examples of such cooperatives such as that described in one of their web pages (copyrighted 1995-1996) entitled "Project: #ED-016 "Santa Clara County Integrated Student Support Services Network" which linked six San Jose schools, a pediatric advice link, a healthcare clinic, the San Jose Juvenile Justice, the San Jose Office of Social Security Administration and various health-related San Jose agencies. The purpose was to demonstrate the use telecommunications technology in order to integrate services. It was not clear what information was shared nor whether private information was relayed electronically. However, as one can be lead to question by such an arrangement, did the schools need to communicate with the Social Security Administration? Haven't we handed our children's privacy over too early as a society by demanding they get a social security number by age two? Another program which Pacific Bell developed was the Project: #ED-003 "California Regional Education Networking Consortium (CRENC)" with the Far West Laboratory and California Department of Education and various county K-12 school districts which was designed to "expand and link into a cohesive network the isolated telecommunications networks that now existed separately in the participating organizations in order to share information about students among educators at all levels electronically." The two applications that were to be demonstrated were "ExPRESS (Exchange of Permanent Records Electronically for Students and Schools): a system for sending individual student records between school sites using Internet E-Mail; and AIRS (Automated Information Retrieval System): a system for electronic collection and aggregation of student information from local school student information systems to meet state and federal reporting requirements among other purposes." (From CalREN web pages of Pacific Bell copyrighted 1995-1996.)

 In other words, local information ( private information?) was placed in an electronic database to be placed in a federally friendly records system. One must wonder whether the parents were aware of how this data would be used and whether consent was obtained.   Is it the intention of the lawmakers who introduce legislation to have massive data sharing of private information at the sole discretion of bureaucrats? Are they aware of the arguments with regard to privacy in the academic and professional communities? Have the children of the Union School District had their records shipped to Washington D.C ; and if so, in what form? Is there a record that the program labeled them a child at risk? What impact would this have in a centralized database that would be used to evaluate career suitability? Should such records leave the security of the parent or guardian? Who is the guardian of the child if the government has such a prerogative? Programs such as the Union School E.M.H.I.-96 have a home visit component. What about the rights of parents and the invasion of privacy by the school system. 

 Another interesting example of then great potential for the invasion of privacy with regard to the NII and database sharing madness is aptly stated in the article from "In Confidence", Genetics and Health Information: Implications for HIM Profession and Information Systems, January 1997, by Laurinda B. Harman, PhD, RRA where the author points out:   As health information management (HIM) professionals, we are responsible for protecting the rights of patients to control access and use of their private, confidential medical information. The Human Genome Project requires us to examine the following core health information management questions. What genetic information should we collect about ourselves and others? Who should control ownership and have access to that information and under which conditions? What decisions might be made based on the availability of the genetic information? Who should make the decisions? What are the implications of having the results of genetic testing in our information systems? Given that genetic tests can reveal information about possible future scenarios, the availability of detailed genetic information in our clinical systems requires us to carefully examine our policies and practices.   When further studying this issue (The Human Genome Project) at the Department of Energy where the project resides, the following issues are raised:   While the HGP offers great promise to humanity, there will be no direct benefit, in either clinical or financial terms, to any of the individuals who choose to donate DNA for large-scale sequencing. Rather, the motivation for donation is likely to be an altruistic willingness to contribute to this historic research effort.  However, individuals who donate DNA to this effort may face certain risks. Information derived from the donors will become available in public databases. Such information may reveal, for example, DNA sequence-based information about disease susceptibility. If the donor becomes aware of such information, it could lead to emotional distress on her/his part. If such health-related information becomes known to others, discrimination against the donor (e.g., in insurance or in employment) could result. Unwanted notoriety is another potential risk to donors. Therefore, those engaged in large-scale sequencing must be sensitive to the unique features of this type of research and ensure that both the protections normally afforded research subjects and the special issues associated with human genomic DNA sequencing are thoroughly addressed.  While some risks to donors can already be identified, the probability of adverse events materializing appears to be low. However, the risks of harm to individuals will increase if confidentiality is not maintained and/or the number of donors is limited to a very few individuals. Either, or both, of these situations would increase the possibility of a donor's identity being revealed without his/her knowledge or permission.  (NCHGR-DOE Guidance on Human Subjects Issues in Large-Scale DNA Sequencing Executive Summary, August 17, 1996) 

 With all the shared relational databases in the super highway's seamless web, one must ask if the government will use the blood samples of newborns, students' specimens from school-based healthcare centers, soldiers and prisoners to add to their genome database? How would we monitor such a practice? Will we need yet more oversight only after an abuse of the system occurs? Are these extreme questions given the experience in the past seventeen years with regard to AIDS testing? 

 And finally, we must address the School to Careers program and the seamless web. Many districts throughout the country are addressing the idea of an electronic portfolio system for student records that would be made available to the employer after the child graduates. An explanation of the efforts in database development efforts can be found in the report The Emergence of Tech-Prep at the State and Local Levels, 1995 by Marsha K. Silverberg and Alan M. Hershey which was submitted to the U.S. Department of Education Office of the Under Secretary Planning and Evaluation Service Tech-Prep Data Collection And Analysis. Returning to the Tucker letter to Hillary Clinton in the section labeled "Labor Market Systems" …  The employment Service is greatly upgraded and separated from the Unemployment Insurance Fund. All available front-line jobs-whether public or private- must be listed in it by law....The system is fully computerized. It lists not only job openings and job seekers (with their qualifications), but also all the institutions in the labor market areas offering programs leading to the general education certificate and those programs- for everyone and for special populations. Counselors are available to any citizen to help them assess their needs, plan a program and finance it, and, once they are trained, to find an opening. A system of labor market boards is established at the local, state and federal levels to coordinate the systems for job training , post-secondary professional and technical education, adult basic education, job matching and counseling. The rebuilt Employment Service is supervised by these boards. The system's clients no longer have to go from agency to agency filling out separate applications for separate programs. It is all taken care of at the local labor market board office by one counselor accessing the integrated computer-based program, which makes it possible for the counselor to determine eligibility for all relevant programs at once, plan a program with the client and assemble the necessary funding from all the available sources. The same system will enable counselor and client to array all the relevant program providers side by side, assess their relative costs and performance records and determine which providers are best able to meet the client's needs based on performance.  If  these one-stop centers become the standard in our society, we will have a society where privacy no longer exists and egalitarianism is the only standard. Individual privacy is what preserves the integrity of a free society. A free society throws no boundaries around what the individual can legally contribute monetarily, intellectually or physically given his God-given talents and motivation. A seamless electronic web that stores the individual's (including his offspring's) private data producing a calculated future labor path with a finite amount of information will only serve to enslave the individual and the once free society. If a government knows all our details cradle to grave, it will be our master. We need to remember that it is the citizen who empowers the government. We need to cut the size and scope of our government by making it clear that our children's privacy is for the parent to keep until that child matures into a voting citizen. To settle for anything less  is to settle for the search and seizure to the child's human dignity and self determination. There can be no free expression, nor free association if the government chooses our future or directs our legacy.