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Engaging Privacy and Information Technology in a Digital Age
Because of the way medicine has evolved, it is helpful though sometimes difficult, to distinguish clearly the following aspects:
The practice of medicine, which is concerned with the medical care of individuals and communities, both to maximize current and future health and to track and monitor current disease;
The science of medicine, which is concerned with the advancement of medical knowledge and technique;
The business of medicine, which determines how and where medical care is provided and how best to ensure that the costs of medical care are held to a reasonable level, as well as what is reasonable in highly competitive profit-driven sectors of the business; and
The regulation of medicine, which is society’s way of ensuring that medicine is practiced competently and in safe settings.
Even within this very particular domain, there are multiple contexts—business, practice, science, and law and regulation—in which privacy considerations as well as other concerns have to be evaluated, and each entails different tradeoffs. For example, it is easy to imagine a patient who is perfectly willing to share very sensitive information for the purpose of improving her medical care but is far less comfortable with providing that information for inclusion in a longitudinal research study. She might also be made uneasy by realizing that the same information might be entered into records that will make their way to an insurance company that will than make decisions about the extent and nature of her coverage (or that of her relatives), or might be made available to a public health laboratory for epidemiological purposes.
There are even subcontexts that are relevant. In the general context of medicine as business, one might identify the business of medicine per se and the business of the fields that surround medicine. The pharmaceutical industry is commonly seen as an adjunct to the health care industry, but pharmaceutical companies are often held to business and ethical standards very different from those that apply to such clearly health-related businesses as hospitals or medical clinics. Insurance companies, which are more and more the payer of the costs of medical treatment, provide yet another subcontext, given that it is the rare person in the United States who is able to obtain consistent medical care without the use of these insurance companies and abiding by their sometimes-onerous information requirements.
To illustrate, consider the issue of privacy as it relates to the availability of health insurance. Using the anchoring vignette approach, a possible survey question might be, How much privacy [do you/does “Name”] havefrom [your/his/her] health insurance provider? Here are a number of possible vignettes: