Background
The information revolution has benefited society in innumerable ways. The growth of the Internet, the development and use of electronic data processing, advanced forms of networking, and data access for corporations and other institutions have facilitated an explosion in e-commerce and increased levels of communication across the globe. The computerization of patient medical records has brought health care systems to new levels of efficiency, provided for faster transmission of patient information among doctors, and facilitated more effective research by universities and drug companies into the risks and benefits of competing therapies and medications. Medical technology and testing also have provided new insights into our genetic makeup and new hopes for bringing about cures for our most devastating diseases.
Yet these same technologies pose serious threats to our personal privacy. Our personal and business information is flowing through an ever-expanding number of computer networks in formats that allow data to be linked, transferred, shared, and sold, too often without our knowledge or consent. The opportunities for an individual to secure employment, insurance, and credit, to obtain medical care, and to participate in electronic commerce are endangered by the misuse of personal information. "Cookies" or unique identifiers stored in one's computer are commonly used to track user interests, often without an individual's consent. Video surveillance in public places and the , ,Federal Bureau of Investigation's utilization of the Carnivore program to surreptitiously monitor individual e-mail communications are examples of recent governmental intrusions into privacy. Not surprisingly, polls demonstrate that Americans are deeply concerned about the intrusion of new technologies into their personal privacy and favor stronger privacy safeguards.
In particular, the public opposes the sale of their personal medical information. The increased sharing of information that reveals the identity of individual patients by medical practitioners, pharmaceutical companies, insurance entities, and employers has made patients wary of losing their personal privacy. This information is routinely disclosed to third parties without the patients' consent, and in some instances, patients' most intimate health histories are being exploited for advertising and profit. The absence of effective privacy protection for medical records and genetic information has reduced the willingness of individuals to seek medical treatment and to share important personal information with their physicians. In studies at the National Institutes of Health, 32 percent of eligible people declined to take a genetic test for breast cancer because of concerns about loss of privacy and the potential for discrimination in health insurance. Beyond depriving individuals of the opportunity to receive the best available medical care, these actions adversely affect genetic research.
The right of privacy is a fundamental American value that is recognized in our laws, business practices, professional obligations, electoral process, customs, and traditions. Just this past June, the U.S. Supreme Court ruled that the use of heat sensors to monitor activity in people's homes without a warrant violates the Fourth Amendment's prohibition of unreasonable searches and seizures. Previous court rulings have established a broader right to personal privacy, most notably, Katz v. U.S. (1967), whereby the Supreme Court recognized that under the U.S. Constitution, individuals have a "reasonable expectation of privacy" against which violations of privacy rights could be measured.
Judaism teaches us that privacy is a fundamental aspect of the human condition, the protection of which is a serious societal and individual responsibility. Our tradition distinguishes privacy as an essential element of personality rather than as only a right of property and considers privacy an aspect of one's sanctity as a child of God. Without this protection, one is stripped of individuality and selfhood and is effectively dehumanized. In commenting on the story of Balaam's refusal to curse the Children of Israel, the Talmud tells us, "He saw that the entrances to their tents were not directly opposite each other, so that one family did not visually intrude on the privacy of the other" (Babylonian Talmud, Bava Batra 60a). Moreover, Deuteronomy (24:10-11) teaches: "When you lend your neighbor any manner of loan, you shall not go into his house to fetch your pledge. You shall stand outside, and the person to whom you made the loan shall bring the pledge to you." Eavesdropping, gossip, and slander are strongly condemned in Jewish teaching, and unauthorized disclosure of information is strictly prohibited. In the Talmud, Rabbi Ami expelled a scholar from the academy because he disclosed a report he had received confidentially twenty-two years earlier. By the eleventh century, the privacy of mail was absolutely safeguarded by Rabbeinu Gershom.
Judaism's regard for the individual and for dignity has made clear the need for the UAHC and CCAR to speak out on safeguarding privacy. In 1971, the UAHC urged Congress to enact legislation to restrict the power of government to collect data on individuals and to allow citizens to examine their personal files. In 1976, the CCAR condemned government agencies that engaged in electronic surveillance, opening mail, and spying, labeling these privacy intrusions as "inimical both to the Bill of Rights and to Judaism's teachings." In 1979, the CCAR first addressed privacy rights in the nongovernmental arena when they "deplore[d] corporate invasions of the individual's right to privacy," such as "administering preemployment tests that intrude into their financial situation, personal habits, criminal record, family relationships, electrical surveillance, and personality tests." In 1997, the UAHC and CCAR expressed support for legislation that would prohibit health care providers or researchers from disclosing genetic data concerning an identified individual without written consent from the individual. The Women of Reform Judaism has taken particular interest in this issue as well. Finally, in 1999, the CCAR called for the protection of previously private information such as medical records, social security numbers, and credit information, stating, "It is the right of all individuals to have control over their personal data."
As Justice Louis D. Brandeis once wrote, "Privacy is the most comprehensive of rights and the right most valued by civilized men." Governmental entities and private sector agencies should therefore take reasonable and necessary steps to protect individual privacy rights and ensure that new technologies are not used as mechanisms for further intrusions into these basic rights. Efforts to harness the growth of these technologies and protect against wrongful dissemination and use of personal information should be undertaken with the recognition of their benefits, especially as they relate to medical research and effective law-enforcement operations. Ultimately, the responsibility of protecting privacy is the obligation of all, particularly the government, and all citizens must be afforded an equal opportunity to protect themselves from unwanted and unwarranted intrusions of privacy and undesirable use of their personal information.
Therefore, the Union of American Hebrew Congregations resolves to:
- Affirm that privacy is a fundamental human right that must be afforded to all, regardless of wealth and access to technology;
- Support federal, state, and provincial legislation and other protections providing, in commercial settings, for fair information practices of notice, consent, access, and security. These include the right to access one's own personal information held by others when that information was provided to them with a reasonable expectation of privacy; appropriate notice when such information is being gathered; limitations on the use and disclosure of such information; and the opportunity to obtain redress when such information is improperly or incorrectly used or disclosed;
- Support legislation to require employers to post notices, in places generally accessible to employees, of workplace monitoring and of company policies where applicable and to limit the collection and use of data about employees;
- Encourage the development and promotion of genuine privacy-enhancing technologies that limit the involuntary or undisclosed collection of personal information and ensure that these mechanisms for the protection of individual privacy rights are accessible to all people;
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Support the enactment and enforcement of regulatory and/or legislative efforts to:
- Require entities to obtain written consent from patients before using or disclosing personal or medical information that reveals the identity of individual patients or before disclosing such information to third parties for marketing, advertising, or other unrelated purposes;
- Prohibit making the dispensation of medical treatment contingent upon consent to share information with third parties for purposes unrelated to treatment or billing;
- Allow patients the right to inspect their medical records and require that patients be allowed to add comments that will be included with the medical records when the patient believes the factual information in the record is in error;
- Ensure that personal health information is properly secured; and
- Provide for criminal and civil penalties for entities that knowingly or with gross negligence violate regulations regarding the use of patient medical records.
- Ensure that the records of health care professionals be protected from use by third parties for marketing, advertising, and related purposes;
- Reaffirm our support of legislation that would prohibit health care providers or researchers from disclosing medical information that identifies an individual without the written consent of the individual and of legislation that would prohibit insurance companies and their representatives from engaging in similar practices; and
- Develop, post, and adhere to privacy policies for the UAHC Web site and lists with regard to any information obtained about members of UAHC congregations and urge synagogues and other Reform Movement instrumentalities to enact similar policies.