The enduring conflict: Public health data and the erosion of individual privacy

“ The principles of the science of health are every day becoming concrete in laws, and habits of thought and living. It is the conviction of the progressive minority that a Nation’s first duty is to conserve and protect its citizens, to develop a community of efficient men and to minimize natural disadvantages. Further, that collective intelligence must plan for the preservation of the people and the perpetuity of the State, and in so doing must recognize public health as fundamental, both in the simple phases and in its comprehensive aspect. ”

“ Given such a national center for health facts or vital statistics, there will be a continuing pressure upon state, county, and city health officers, upon physicians, hospitals, schools, and industries to report promptly facts of birth, sickness, and death to national and state centers able and eager to interpret the meaning of these facts in such simple language, and with such convincing illustrations, that the reading public will demand the prompt correction of preventable evils. ”

“ Medical research habitually strives to arrive at something beyond abstract truth. It seeks to promote public and private safety and happiness, and the material welfare of society. Its devotees have in mind the discovery of means of remedying misery or warding off calamity; and they know that whatever eontributes to health or longevity in any community or nation contributes to its industrial prosperity; so that they are justified in hoping for results from their work which will promote human welfare. ”

“ HYGIENE, as a science, traces the causes of disease to which mankind is exposed in every phase of life. Its practical value lies in the preventing of these causes, through the sanitation of our surroundings and the rational care of body and mind. The gradual improvement of public health and the incident saving of vital energies as the result of true hygienic living would easily make this field of knowledge rank among the most potent factors in the development of races. ”

“ To prevent disease one must control the conditions of life. Especially in youth, when the human being is most amenable to influences for good and evil that affect the whole future life, must one regulate the conditions of life, if health is to be preserved. The doctor finds that health means far more than a good digestion. It means a conscious sense of well-being all over, contentment, power of work, capacity to resist evil influences, and, to some extent, good morality. It means a sound mind in a sound body. The process and the method of education undoubtedly influence health strongly. ”

“ That is, protected health information may not be so used unless the public interest and the need for disclosure clearly outweigh the potential for injury to the patient, to the physician-patient relationship, and to the treatment services. Protecting the privacy of patients' protected health information promotes trust in the health care system. It improves the quality of health care by fostering an environment in which patients can feel more comfortable in providing health care professionals with accurate and detailed information about their personal health. ”

“ In the interest, therefore, of the public health and the lengthening of life and increasing the efficiency of man, we must bring ourselves to the point of acknowledging that the State should control things which in [Pg 90] themselves are injurious and unnecessary must be established. In other words, the individual’s rights, so dear to every lover of freedom, the cardinal principle of democracy, must give way to the public good. No one has any right to practice any habit, or induce others to do so, which in itself is likely to prove injurious to humanity. ”

“ By computerizing health records, we can avoid dangerous medical mistakes, reduce costs, and improve care. To protect the doctor-patient relationship, and keep good doctors doing good work, we must eliminate wasteful and frivolous medical lawsuits. And tonight I propose that individuals who buy catastrophic health care coverage, as part of our new health savings accounts, be allowed to deduct 100 percent of the premiums from their taxes.
A government-run health care system is the wrong prescription. ”

“ Only those familiar with the necessities for correct data in health work appreciate the immediate and imperative need for statistical information. Records of births and deaths and of supplementary details form a basis for advancement. Without such data, the sanitarian gropes in the dark. Yet no request from the health department is so lightly treated. Reform in this can be wrought slowly. Appropriations to pay registrars and enforcement through the courts are the means for the inauguration of a more perfect system. ”

“ The accurate registration of births and deaths, which has been called the ‘Bookkeeping of Humanity,’ is a fundamental necessity for a study and knowledge of disease, and for all public health work. Therefore, we affirm our belief in the importance of vital statistics registration, and recommend that all States now without proper vital statistics adopt as early as possible the model bill for the registration of vital statistics indorsed by the United States Bureau of the Census, and by many prominent professional and scientific bodies. ”

“ As good citizens, it is the duty of physicians to be ever vigilant for the welfare of the community, and to bear their part in sustaining its institutions and burdens: they should also be ever ready to give counsel to the public in relation to matters especially appertaining to their profession, as on subjects of medical police, public hygiène, and legal medicine. ”

“ The physician who refuses to tell the board of health when smallpox or typhoid fever first breaks out takes human life just as truly as if he tore up the tracks in front of an express train. This is another way of saying that parents and teachers must fit themselves to know whether the family physician and their community's physicians are efficient practitioners and teachers. Every one can learn enough about the preventable causes of sickness and depleted vitality to insist upon the ounce of education and prevention that is better than a pound of cure. ”

“ From what has been said, the necessity will be evident to introduce into the council those physicians who have made health, and particularly the public health, a special study; and to join with them chemists, and, above all, manufacturing chemists, because what would many of those persons, whose life has been passed in hospitals and the exclusive study of medicine, be before a steam engine? It is clear that they would often be deceived by those adroit and skilful manufacturers who would have an interest in concealing the truth. ”

“ The prevention of pollution of water supplies, the compelling of reasonable cleanliness in public vehicles for human transportation by land and by sea, the enforcement of precautions against the spread of disease in public hostelries and places of assembly, the organization of a national health bureau—these are all tasks which must speedily be undertaken, and they may be led to rich accomplishment if the physician will but hold more clearly in his consciousness his primal duty as a citizen. ”

“ The second main branch of public health work is the suppression of communicable diseases. Suppressive measures include the establishment of quarantine, the isolation of patients, disinfection, vaccination and the management of epidemics. Contrary to the custom of twenty years ago, all the best work in these directions to-day is based upon a scientific knowledge of what we may call the natural history of disease. In all these matters of control the dictum of the health authority is supreme. It can be resisted only through intervention by the courts. ”

“ Yet, there are cases where, for the preservation of the health of the community, and for the general convenience, governments have everywhere exercised the power of interfering with private property, and limiting the control of the owners. To preserve the public health, we abate as nuisances, by process of law, slaughter-houses, and other establishments offensive to health and comfort, and we provide, by compulsory assessments upon land-owners, for sewerage, for side-walks, and the like, in our cities. ”

“ While these proceedings were carrying on, the public alarm was increasing in every direction; the medical profession was visited with the most severe, and we think, unjust indignation, inasmuch as it was believed to be the secret encourager of a system by which human life was sacrificed with the most heartless indifference, and the detection of the crime became a matter of extreme difficulty, almost amounting to impossibility, on account of the secrecy with which the proceedings are carried on in the hospitals and the private dissecting-rooms. ”

“ Technologies that allow individually identifiable health information to be rendered unusable, unreadable, or indecipherable to unauthorized individuals when such information is transmitted in the nationwide health information network or physically transported outside of the secured, physical perimeter of a health care provider, health plan, or health care clearinghouse. ”

“ A description of the types of unsecured protected health information that were involved in the breach (such as full name, Social Security number, date of birth, home address, account number, or disability code) . (3) The steps individuals should take to protect themselves from potential harm resulting from the breach. (4) A brief description of what the covered entity involved is doing to investigate the breach, to mitigate losses, and to protect against any further breaches. ”

“ Every establishment keeping the records of HIV-related information of protected persons shall adopt data protection measures in accordance with the guidelines to ensure that such information is protected from disclosure. ”

“ Municipal and State health organizations have accomplished much of late in the protection of the people against disease. But the humiliating confession must be made that in many measures of public sanitation in this country we are far behind the requirements of science. ”

“ Yet as a public health official, seeing close at hand the problems of preventable disease and the meager efforts made to solve them, I often wonder whether you and I really believe these things, and, if we do, why we do not act upon our knowledge. Is it merely a rhetorical phrase that 600,000 people die needlessly in our midst—or is it really true? ”

“ And yet, when it is proposed to co-ordinate the various public health activities of the Government in order to increase the efficiency and usefulness of this splendid body of men, the interest of our countrymen in this service seems to end with admiration. For notwithstanding our confidence and appreciation we have permitted a small but active body of people who are more concerned in treating disease than in preventing it to block the consummation of this thoroughly sensible and business-like consolidation of the various bureaus under one responsible head. ”

“ But the inevitability with which all statements bearing on public health are in these days bruited abroad and the avidity with which they are received make it incumbent more than ever on those who speak with authority on such subjects to observe caution and discretion, for doubts or speculations that would be harmless or even stimulating when addressed to a critical and well-informed audience, may become confusing or misleading when, having passed through the alembic of the journalistic mind, they appeal to the general. ”

“ The same thing is true with regard to the spread of the acute contagia, the burden of venereal disease, the obscure ill effects of defective eyes and ears and teeth, and a dozen other problems which in greater or less degree concern the public health. In every one of these cases the results we are striving for can only be reached by spreading a clear knowledge of the ways in which disease spreads, and the ways in which it is prevented, among the mothers who bring up babies and the men who pay rent in the tenement and work in the stores and factories. ”

“ With the progress of health education in the public schools we may look for the day when the social crime of spreading communicable disease will be realized at its full value, so that it will be recognized as wanton recklessness, not courage, to continue business or social intercourse when "coming down," half-sick with some as yet undefined but impending disease, and no thoughtful person will hasten to mix with his fellows when possibly still a carrier after an attack. ”

“ While social ambition may be operative in many cases, perhaps peculiarly among those coming to the notice of a specialist in medicine, may there not be some data that the statistician can not collect—some pertinent facts which in the nature of the case are not within reach of the investigators? ”

“ EPA, supra note 29, 541 F.2d at 24-25, we pointed out: Questions involving the environment are particularly prone to uncertainty. Technological man has altered his world in ways never before experienced or anticipated. The health effects of such alterations are often unknown, sometimes unknowable. While a concerned Congress has passed legislation providing for protection of the public health against gross environmental modifications, the regulators entrusted with the enforcement of such laws have not thereby been endowed with a prescience that removes all doubt from their decisionmaking. ”

“ The public health, or the health of people en masse, in groups or communities, is more than an adding together of the conditions of health in which each person in the group finds himself. Just as the mob-sense, the group consciousness, or the dominant spirit of the mass, as one chooses to call it, differs from the individual personalities which compose it, so the public health differs from the individual health of each single person. The public health is intangible, though none the less real. ”

“ Making available to the public or provision of the information about trade secrets or business operations of a person, legal person or group will hamper the right, competitive position or just interests of such person, legal person or group, except where it is necessary for public interest, protects people's life, body, health, or is consented by the person concerned. ”