Privacy and Health Research. The Universe of Health Data


So many kinds of health data are collected that it would be distracting and soporific to do more here than take note of the major categories. But it is essential to recognize: (a) that great research power resides in a diversity of health data, and (b) that privacy issues surround many kinds of data beyond those in primary medical records.

Health data include:

  • Primary medical, hospital, and clinic data (including various managed-care data)
  • Prescribing, pharmacy, clinical laboratory, and imaging data (x-ray, magnetic resonance, sonagram...)
  • Administrative and financial data (billing, payment, insurance, audit...)
  • Vital records (birth, adoption, death...)
  • Exposure registries (asbestos, x-rays, childrens' lead...)
  • Disease registries (melanoma, tuberculosis, burn, congenital malformation...)
  • Other monitoring and surveillance registries (drinking water fluoridation, infant nutrition, hearing conservation...)
  • Genetic data registries (pedigree analyses, screening, gene maps...)
  • Intervention registries (vaccination, cardiac pacemaker...)
  • Military health and hazard-exposure data (Agent Orange, artillery noise...)
  • Occupational health and hazard-exposure data (coal dust...)
  • Incident-, accident-, and disaster-exposure data (Love Canal, Three Mile Island, Bhopal...)
  • Tissue samples (blood, semen, ova, pathology...), with associated data
  • Surveys of attitudes and practices (diet, alcohol consumption, dental hygiene, condom use...)
  • Clinical-trial and other experimental data
  • Regulatory data (in the Food and Drug Administration, in city and State health departments...).

All kinds of data may reveal intimate information. Prescription data, for instance, often indicate the disease, or at least the kind of disease, being treated. Blood-type holds implications about parentage. Just the very fact that a person has entered into a relationship with a psychotherapist, or a drug-abuse treatment center—as revealed, say, by billing records or clinic appointment logs—can be held against the person by employers or others.

Further, besides carrying technical observations relating to the main purpose of an encounter between a person and a healthcare or research system, records may contain subjective remarks on general health or lifestyle ("coughs a lot, probably heavy smoker"), incidental observations ("child has numerous bruises and small burn scars on back" or "spouse opposed to surgery"), or speculations ("taking anabolic steroids?"or "bulimic?").