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Current privacy rules governing medical information disclosures, traditional medical recordkeeping and DNA fingerprinting are not adequate protection for stored information provided by advanced genetic technology. Four rules for maintaining privacy in public and private DNA databanks are proposed. A DNA databank should not be opened without first giving public notice concerning its intent and future impact. Collection of DNA samples should be prohibited without prior agreement regarding purpose, use, privacy and access to stored samples. Samples should only be used for their original purpose and access should be denied to any third party unless authorized by the individual. Finally, individuals whose DNA samples are stored should be notified of any developments that may affect their health. Legal aspects of privacy of medical information and implications for DNA databanks are discussed.

The article discusses how public ownership of patient medical data in the United States can be of great help to public health agencies to improve safety, public health monitoring and medical knowledge. The laws in most states treat patient data as physical property that physicians and hospitals own, but allow access only to patients and insurers.

Secretary of the Department of Health and Human Services Donna Shalala has proposed that law enforcement officers have access to medical records held by physicians and insurers when required for investigations. Such officials, unlike physicians, have taken no oath to preserve patient confidentiality. Privacy of medical records is presently controlled only by state laws. Mental health practitioners, fearing loss of a patient's trust, favor court permission prior to releasing confidential information to law enforcement officials. Congress is considering several legislative proposals.

The most significant development in medical informatics continues to be efforts to develop an electronic patient record. However, this will depend on concurrent efforts to ensure the confidentiality of computer-based information. The National Library of Medicine awarded grants to 19 projects involving electronic patient records and telemedicine. Other developments include a map of the human genome elucidated thus far on the Internet, which includes links to scientific articles and protein sequences. The World Intellectual Property Organization has proposed international treaties covering online information.

A survey was used to evaluate the attitudes of sexual or needle-sharing partners of HIV-infected persons who were notified by the health department of the possibility that they may have been infected with the virus that causes AIDS. Questionnaires were sent to a group of 202 partners who had been previously notified by the health department in a rural South Carolina district. Responses were received from 132 individuals. Eighty-seven percent of those returning the surveys agreed that the health department had properly informed them, and 92 percent believed that this practice should be continued in the future. There were no statistical differences in attitudes among the responders in regard to whether they were homosexual, bisexual, heterosexual, drug-users, male, female, black or white. (Consumer Summary produced by Reliance Medical Information, Inc.)

The practice of medicine is increasingly dominated by information: its recording, retrieval, communication, and use. This is true in the areas of data collection and documentation of patients' conditions in their medical records. The National Library of Medicine produces MEDLINE, the most important medical literature database. It lists more than 600,000 articles each year, a volume of knowledge even the most industrious physician would be hard put to keep up with. Practitioners need to develop the skills necessary to consult this giant database; software packages have been developed to facilitate use of MEDLINE. A new problem has arisen; the format of physician training has not changed appreciably to keep up with this tremendous expansion in medical knowledge. Some medical schools have restructured their curricula, even including training in information technology. Lower prices for computers, and the availability of graphic displays and other educational aids, make acceptance of this mode of learning easier. The importance of accurate, accessible patient records led to the creation of a new agency, the Agency for Health Care Policy and Research, whose duties include developing standards for medical records. No longer will a paper-based chart suffice. New technologies, including voice recognition, will allow physicians to use the computer terminal directly. One problematic aspect of applying computer technology to problems of patient care is the complexity of and variability in medical language. The National Library of Medicine is currently attempting to develop a Unified Medical Language System that will allow information from many machine-readable sources to be integrated. Use of the computer in medicine will be aided by the recent emergence of medical informatics as a discipline with its own organization, the American Medical Informatics Association. The field has been discussed in major medical publications, and training fellowships are available for interested physicians. (Consumer Summary produced by Reliance Medical Information, Inc.)

The Department of Health and Human Services has issued a final rule providing nationwide health information privacy protection under the Health Insurance Portability and Accountability Act of 1996. The rules will not pre-empt state laws if the state law provides greater protection.

Background: New rulings nationwide require health services researchers to obtain patient consent before examining personally identifiable data. A selection bias may result if consenting patients differ from those who do not give consent. Objective: To compare patients who consent, refuse, and do not answer. Design: Patients completing an in-office survey were asked for permission to be surveyed at home and for their records to be reviewed. Survey responses and practice billing data were used to compare patients by consent status. Setting: Urban family practice center. Patients: Of 2046 eligible patients, 1106 were randomly selected for the survey, were approached by staff, and agreed to participate. Approximately 87% of the non-participants were eliminated through a randomization process. Main Outcome Measure: Consent status. Results: A total of 33% of patients did not give consent: 25% actively refused, and 8% did not answer. Consenting patients were older, included fewer women and African Americans, and reported poorer physical function than those who did not give consent (P [is less than] .05). Patients who did not answer the question were older, included more women and African Americans, and were less educated than those who answered (P [is less than] .02). Visits for certain reasons (eg, pelvic infections) were associated with lower consent rates. On multivariate analysis, older age, male sex, and lower functional status were significant predictors of consent. Conclusions: Patients who release personal information for health services research differ in important characteristics from those who do not. In this study, older patients and those in poorer health were more likely to grant consent. Quality and health services research restricted to patients who give consent may misrepresent outcomes for the general population. Arch Fam Med. 2000;9:1111-1118

A 1998 incident illustrates the ethical problems in providing access to medical records without the patient's consent. This often happens in pharmacy benefits management programs. These programs are used to improve the quality of medical care, warn doctors of adverse drug reactions, and remind patients to refill their medications. Two Washington, DC pharmacies sent their customers' prescription records to a database marketing firm. The firm in turn mailed letters to some customers promoting a certain drug. Public outrage caused both pharmacies to cancel the program.

Regulations proposed by the Department of Health and Human Services covering access to medical records do not go far enough in protecting patients' privacy. As of February, 2000, no federal legislation exists to protect medical records and many state laws are inadequate. The proposed regulations would allow many agencies, companies, and individuals to access medical records without the patient's consent. This would even include lawyers and law enforcement officers. One bright spot in the regulations is that medical records could not be sold or rented for marketing purposes without the patient's consent.

Laws are needed to protect the privacy of electronic health information. Electronic health information includes patients' medical records and this could lead to violations of privacy and lawsuits. Health information about an individual should be considered extremely sensitive information and should not be revealed to anyone without that person's consent. Many of the necessary protections should be implemented at the national level. Doctors can also assist in developing secure information networks.

The article discusses the need for a national privacy protection strategy to be adopted by the U.S. government to ensure safety and privacy of hesitative information contained in medical records and data. Public health agencies at all levels need to bring about fundamental reforms to safeguard the privacy of all data by following ethical guidelines.

A physician urged a group of corporate human resources managers to choose health plans that protect the confidentiality of patient records. Now that medical records are being computerized, the potential for abuse exists. Many people have a legitimate right to access patient records, but this should never be done without the patient's consent. Medical records can also be stripped of any identifying information or can be coded so the patient can be identified later. Patients may refuse to reveal information about their health if they believe their records will be accessed without their knowledge.

Congress is considering two bills that would protect the confidentiality of electronic medical records. No data should be collected without the informed consent of the patient. Informed consent should also be required if the information is used for a purpose other than that for which it was collected. Some observers do not believe either the Medical Records Confidentiality Act or the Health Information Confidentiality in the Age of New Technology Act provide adequate safeguards against unauthorized use.

Improvements in computer technology, the Internet and the development of wireless and satellite communications have led to several innovations in medical informatics. Telemedicine involves transmitting images and other information to and from medical centers. It could lower costs substantially by allowing physicians and nurses to participate in a patient's treatment without having to travel to the site. Many medical journal publishers are supplementing their traditional printed product with a site on the Internet. This is facilitated by their adoption of the standard generalized markup language (SGML), which uses standard tags imbedded in the text that allows the integration of text supplied by different publishers. The Digital Imaging and Communications in Medicine (DICOM) and Health Level 7 standards can be used in telemedical applications. The development of the electronic patient record has generated concerns about confidentiality.