Mr. MCINTOSH. Thank you, Mr. Nojeim. I want to explore with you those recommendations during the questions and answers. Ms. Bitol, thank you for coming today. You are also with the American Civil Liberties Union, and I appreciate your work. Share with us a summary of your testimony. MS. BITOL. Thank you, Mr. Chairman. On behalf of the American Civil Liberties Union and more than 275,000 members nationwide, I appreciate the opportunity to testify before you on the narrow issues of the problems concerning establishing a unique patient identifier which is mandated under the Kassebaum-Kennedy Health Insurance Portability and Accountability Act of 1996. The dangers posed by a unique patient identifier are no different than those dangers posed by a national ID. Both will allow unfettered access to personally identifying information to anyone with the proper keys. Besides information about physical health, medical records may include information about family relationships, sexual behavior, substance abuse, and even the private thoughts and feelings that come with psychotherapy. This information is often keyed to a Social Security number. Because of a lack of consistent privacy protection and the pervasive use of Social Security numbers, individuals' information may be easily accessible. In fact, any private investigator will tell you, if you have a Social Security number of an individual, you can have access to almost any information about them. Currently, there is no comprehensive Federal law to protect the privacy of health care records. Our educational records receive protection. Even our video records remain private. However, public perception is that there is Federal privacy law to safeguard medical records and that there is Federal law that gives patients the right to access, review, and comment on those medical records. Unfortunately, this perception is false. The danger with this one-way system is that once personal information is collected for one purpose, the temptation to use it for another is often irresistible. The unauthorized use and abuse of this confidential information is already widespread. Most Americans would be alarmed to learn how many pairs of eyes are scanning what they thought was privileged communication with their doctor. According to a recent Time Magazine article, trading of health information has already become a $40 billion industry. A report by the Institute of Medicine noted that the roster of parties claiming a "need to know" what is in an individual's medical records was too numerous to list. The problem of protecting privacy, especially medical privacy, is that many perceive the need for a balancing test, balancing privacy with the needs of industry research and technology. While technological advances bring tremendous benefits to society, this quid pro quo should not and need not be the loss of control over our own personal information. It is the position of the ACLU that strong Federal regulation which establishes enforceable privacy protection for personal health information is critical. The ACLU supports Federal legislation that provides individuals with meaningful control over who may have access to their records, including limiting some persons to specified information only. Additionally, redisclosures should be prohibited except with specific permission or, with very narrow circumstances, upon expressed statutory authorization. We support Federal privacy protection in this area for three primary reasons: First, staggering technological innovations which allow for the easy transfer of personal health information over great distances; second, the expansion of managed care, which will necessarily expose confidential information to a wider network of people; and third, the unevenness of privacy protection provided by current State law to medical records where they are kept on paperbased or computerized information systems. As more and more companies merge and interact with each other, the ability for a company to run a data base storage for medical records and house a credit reporting data base is not only a potential but a reality. Our objections focus on the unrestricted access to private information by nonhealth-care providers, the potentials for abuse, and the governmental implementation of a program that, from all indications, it does not have a successful track record in managing. One need only look at the Social Security number fiasco and the uniform driver's license requirement, which makes it almost mandatory for States to use Social Security numbers as driver's license identifiers, and other breaches of privacy facilitated by the Federal Government. Further, with regard to the massive data base industry where patient information has been cross-referenced with credit report information, as we in Washington, DC, recently found out this year, when drugstores where we purchased our prescriptions were utilizing these data bases to target people as potential marketing prospects for new drugs or refills. It is this unrestrained access to patient information that is the problem, the result of an unrestricted arena in which patients are the losers. One need only look at the concerns that I have stated today, that have been echoed by so many, to see the potential dangers posed by implementing a national IĎ. I submit, finally, that the national ID system, like the unique patient identifier, poses a direct threat to personal privacy and to security of personal information of all Americans. I urge you to consider the fact that not only my privacy will be infringed upon but your privacy as well. I just want to shift gears for 1 second and say something personal, which is the fact that 7 years ago I adopted a daughter and, like most teenagers, when she turned 17, I allowed her to get her driver's license here in Washington, DC, where we live. As a protector of privacy, I know firsthand the dangers of putting your Social Security number on your driver's license in fact, as a lawyer, I am frightened because I actually have a client named Marvin Young and he doesn't look like the gentleman sitting next to me. But the steps that I had to go through to have my daughter's Social Security number not used as her identifier-I had to have three things notarized, I had to take time off of work, I had to go to the Department of Motor Vehicles, I had to get a birth certificate, I had to show her adoption papers. I had to get an order from the California court showing that I was her mother, because we had two birth certificates. "Unbelievable" is the only word I can use to describe this situation. And, we are talking about the steps taken to protect her privacy. We are not even talking about identity theft. Mr. MCINTOSH. So, all the pressure was for you to just say, yes, go ahead and use the Social Security number? Ms. BITOL. Yes, right here in Washington, DC, those are the steps you have to go through. In fact, after all that, both she and I had to sign something to issue a random number. On top of all that, try going to the grocery store or any store here and try writing a check, they look at the number and say, "Well this isn't your Social Security number. Why don't you have a Social Security number? Who are you? This is a fake ID." It is unbelievable. Mr. MCINTOSH. Because the community is used to looking for Social Security numbers. MS. BITOL. That's right. Most people don't even realize saying you don't want to use your Social Security number is an option. Mr. MCINTOSH. That is amazing. I am blessed in Indiana. They allow you to use a different number, and the Social Security number is an option to put on there if you want to. MS. BITOL. That's the way it is in California where we are from, but in Washington, DC, it is a different story. [The prepared statement of Ms. Bitol follows:] 52-910 99-2 STATEMENT OF SOLANGE E. BITOL LEGISLATIVE COUNSEL AMERICAN CIVIL LIBERTIES UNION WASHINGTON NATIONAL OFFICE ON A NATIONAL ID CARD - PATIENT IDENTIFIERS BEFORE THE HOUSE OF REPRESENTATIVES COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT SUBCOMMITTEE ON NATIONAL ECONOMIC GROWTH, NATURAL RESOURCES AND REGULATORY AFFAIRS September 17, 1998 The American Civil Liberties Union is a nationwide, non-partisan organization of more than 275,000 members devoted to protecting the principles of freedom set forth in the Bill of Rights. On behalf of the ACLU, I appreciate the opportunity to testify before you today about personal privacy, especially medical privacy, and the threat that a national ID poses on the privacy rights of all US citizens. From using the telephone to seeking medical treatment or applying for a job or sending e-mail over the Internet, Americans' right to privacy is in jeopardy. The reason: our personal and business information is being digitized through an ever-expanding number of computer networks in formats that allow data to be linked, transferred, shared and sold -- usually without our knowledge or consent. Regarding medical records, many Americans may not realize how comprehensive their medical records are. Contents of Medical Records ⚫ patients name, address, age, next of kin, social security number ⚫ name of parents, date and place of birth ⚫ marital status, religion and military service ⚫ medical, social and family history ⚫ use/abuse of alcohol and tobacco A complete medical record may contain more intimate details about an individual than can be found in any other single document. The risks of misuse are tremendous. Risk of Misuse of Medical Data improper treatment ⚫ loss of employment ⚫ loss of insurance ⚫ loss of privacy ⚫ reluctance to obtain medical care Besides information about physical health, medical records may include information about family relationships, sexual behavior, substance abuse, and even the private thoughts and feelings that come with psychotherapy. This information is often keyed to a social security number. Because of a lack of consistent privacy protection in the use of social security numbers the information may be easily accessible, in fact, any private investigator will tell you if you have a social security number of an individual, you can have access to any information about them. The dangers posed by a unique patient identifier are no different than the dangers posed by a national ID, both will allow unfettered access to personally identifying information, to anyone with the proper keys. Currently, there is no comprehensive federal law to protect the privacy of health care records. Our educational records receive protection - even our video rental records are protected, however, public perception is that there is federal privacy law to safeguard their medical records, and that there is federal law that gives patients a right to access, review and |