Fwd from the Coalition for Patient Rights (CPRMA@aol.com) Alert Patient Privacy at Risk Contact the ACLU The ACLU appears on a list of endorsers of the Wofford/Dodd amendment which amends one of the Senate health care reform bills. Major portions of W/D would have a severely adverse impact on the confidentiality of medical records. Although W/D has been rendered partly obsolete as newer health care reform bills are advanced under new names and new coalitions, many of its principal features remain intact in the new bills. It has become a reference point. It is for this reason that the signature of the ACLU on a list of endorsers of W/D (on a document entitled "Wofford/Dodd Fact Sheet") is so troubling and so damaging. The amendment creates federal standards for the disclosure of personally identifiable health care information and establishes a framework for a national health care data network. On the surface, the goals seem good. Who wouldn't be for establishing strict federal guidelines to ensure privacy where none existed before? For that matter, why not support a data network that would allow a treating physician to have immediate access to all pertinent medical information? Clearly we have to look beyond the advertisement and into the details of the bills for the answers to these questions. For example, in Sec. 508(a) of Mitchell 3 (the bill offered by the Senate majority leader), the "health information network service" is made the agent of the provider. This means that once a third party bureaucratic agency receives the information electronically, it is deemed the same as the health care provider in making decisions about the release of the information. Sensitive medical information, including intimate psychological information, would be available electronically to an increasing number of people legally--not to mention the well-documented risks of illegal access. Among those with enhanced access would be law enforcement officials and government agencies. Even researchers could access personally identifiable health information, if an institutional review board holds that the project is "of sufficient importance to outweigh the intrusion into the privacy of the person who is the subject of the information." The patient has no right to refuse such disclosure even though it includes his or her name. There are many examples of person-identified medical information, including sensitive personal information, that have been shared with health care providers with the expectation of privacy that would now be legally accessible to many third parties. The argument is made that this kind of access already exists, so why not codify it. The logic is faulty. It is true we already have serious problems protecting the privacy of medical records in this country. Legally sanctioning medical access to an ever enlarging list of third parties is not the solution. It will only compound an already serious problem. A compelling argument has been made that the establishment of a national health care data network that requires all providers to disclose information about every patient contact would violate the Fourth Amendment's prohibition of "unreasonable searches and seizures" of the person. Many organizations have raised serious concerns about Wofford/Dodd, including the American Psychiatric Association, the American Psychoanalytic Association, Coalition for Patient Rights, National Organization of Women, and the AIDS Action Council. We hope that the ACLU joins us in support of genuine privacy legislation. We hope that there was an error when it appeared on a short list of supporters of Wofford/Dodd (June 10, 1994) Call your state chapter of the ACLU. It is listed as Civil Liberties Union of (your state) in the white pages. Let them know of your concern.If possible, also fax Laura Murphy Lee at the ACLU in Washington (202-546-0738) and let her know your concern regarding the position of the ACLU in supporting W/D. This alert is provided by the Coalition for Patient Rights, Massachusetts (617, 433-0114).