October 1, 1998
This is an urgent request, on behalf of many thousands of practicing physicians and their patients, that you do NOT support the Database Protection Title of the Digital Millennium Copyright Act, which is deceptively named the "Collections of Information Antipiracy Act." As an organization devoted to the defense of the traditional practice of medicine since 1943, we specifically oppose the letter co-signed by the American Medical Association in support of this dangerous legislation.
The letter co-signed by the AMA contains three blatantly disingenuous statements: (1) the Act lacks opposition in the House of Representatives; (2) there was an extensive debate; and (3) opposing groups had an extensive opportunity to present their views.
In fact, the dangerous provisions were slipped into the bill and passed by voice vote as part of the consent agenda: a serious abuse of this mechanism, which is supposed to be used only for noncontroversial measures such as the naming of Post Offices. There was no debate on the final form of the bill although there is substantial opposition, as from the American Association for the Advancement of Science, the National Academy of Sciences, the Association of Research Librarians, the Digital Future Coalition, and the Electronic Freedom Foundation (see Science, August 7, 1998, pp. 786-787). In addition, a diverse group of 38 corporations and organizations sent a letter dated September 10 to Senators Hatch and Leahy noting that "we strongly oppose it and its inclusion by the House in unrelated WIPO treaty legislation." Aside from groups who would profit from this legislation (including the AMA, despite its "non-profit" status), there is nearly unanimous opposition.
If consumer groups were widely aware of this legislation, they would surely oppose it strenuously. The Act would create a new federal right to collect, maintain, and harvest highly personal medical information about patients nationwide. It is apparently the centerpiece of an ongoing effort by large corporate "health-care providers" and the Clinton Administration to achieve the central objectives of Clinton's initial Health Care Task Force.
The Act would also create a powerful financial incentive to create such data bases.
Voters do not want their personal medical records to be marketed and harvested as though they were no more confidential than their consumer buying habits. They will be just as outraged by this as they are about earlier stealth legislation, the provision of Kassebaum-Kennedy "insurance reform" that enabled the government to assign personal identifiers to every patient. The public is now demanding that implementation of this provision be stopped.
Despite the fact that this legislation would adversely affect all Americans who might someday be patients, we are unaware of any grassroots physician or patient groups that were consulted about this bill, and it has not benefited from meaningful public hearings.
The Collections of Information Antipiracy Act seems designed to circumvent public outrage by allowing private entities to build the data bases, rather than the government. The resulting system would amount to a government-corporate collaboration (a "public-private partnership") to accomplish through stealth tactics what could not otherwise be achieved. It has the backing of the prospective partners, including the Clinton Administration and the current leadership of the AMA.
The September 28 letter cosigned by the AMA purports to be a rebuttal of objections to the data base provision, but it actually contains no substantive justification for its sweeping language. Most of the AMA's letter is devoted to unsupported claims that existing data bases are in jeopardy of theft from abroad, even though the letter does not and can not cite a single significant instance of such theft that would be prevented by this proposed legislation.
Indeed, the very proposition that health care corporations need a special federal law to encourage their development of medical record data bases is patently absurd. No one in Europe or Asia will have a real financial interest in stealing American medical records. On the contrary, the enormous financial interest in American medical records is by American corporate and governmental units that seek the enormous profits and control that such records would yield. Moreover, European laws of privacy in consumer information are far more restrictive than in America, so any comparison of laws about establishing proprietary interests in such data bases is misplaced. Congress should first establish meaningful protection in the privacy of patients' medical records, and only afterwards consider whether it is necessary to create incentives for the corporate development of medical record data bases. An essential feature of patient protection would be the requirement of specific patient consent to have the records incorporated into the data base.
If the Conference includes this data base provision in its version that is sent to the floor of the Senate, AAPS urges you to propose an amendment that would eliminate all medical records or information from coverage by the bill. Voters will greatly appreciate your efforts to avoid repeating the mistake of the Kassebaum-Kennedy invasion of their privacy.
Please feel free to contact us on this important issue.
Jane M. Orient, M.D.