Privacy and Health Research. Research to Reduce Public-Health Threats


Whether or not they are to be considered "research," a classic category of investigations have to do with coping with disease outbreaks and epidemics, and with other emerging or emergency threats.

In this regard it is hard not to think again of the renowned work of the U.S. Centers for Disease Control and Prevention (CDC). The CDC regards itself mainly to be a "public-health practice" agency, as differentiated from a "research" agency. The CDC is depended upon, both by the U.S. and by other countries, for quick response to disease outbreaks, whether classical "food poisoning" or rabies, or known but rare diseases (bubonic plague, yellow fever...), or new or exotic ones (Ebola...). It also charts the waves of shiftily-changing influenza viruses that drift around the globe seasonally, and many other threats. It performs much work outside the U.S., and of course it cooperates with host governments and exchanges data.

A recent report on emerging infectious diseases warns of staggering problems ahead:46

Despite historical predictions to the contrary, we remain vulnerable to a wide array of new and resurgent infectious diseases. ... Our vulnerability to emerging infections was dramatically demonstrated in 1993. A once obscure intestinal parasite,Cryptosporidium, caused the largest waterborne disease outbreak ever recognized in this country; an emerging bacterial pathogen,Escherichia coli O157:H7, caused a multi-state foodborne outbreak of severe bloody diarrhea and kidney failure; and a previously unknown hantavirus, producing an often lethal lung infection, was linked to exposure to infected rodent. ...

Methicillin-resistant Staphylococcus aureus, a common cause of hospital infections, may be developing resistance to vancomycin; penicillin resistance is spreading in Strepto- coccus pneumoniae; cholera will likely be introduced into the Caribbean islands from the current pandemic in Latin America, and the new strain, Vibrio cholerae O139, is spreading throughout southern Asia.

To combat these as well as the many more classically known infectious diseases, a great many personally identifiable data will have to be studied, by the CDC and others. And the research will have to be truly international, as much of HIV–AIDS research is.47

Survey studies. Some important research on public-health threats involves social- scientific methods. Attitudes are surveyed, to inform public-health promotion and disease prevention campaigns. For example, the U.S. National Institute for Child Health and Human Development has conducted large, highly confidential, interviews of adolescents' sexual attitudes and practices; so has the Centers for Disease Control and Prevention. The consent process is conducted carefully, and the promised confidentiality is guarded closely.

Efforts can be made to respect privacy during data-gathering itself. In a large adolescent health ("Add Health") study under the U.S. National Institute of Child Health and Human Development and other agencies, privacy in interviews involving potentially sensitive questions was afforded by having the adolescents self-administer survey questions via dedicated computer terminals.48

(46) U.S. Centers for Disease Control and Prevention, "Addressing emerging infectious disease threats: A prevention strategy for the United States," Preface (CDC, 1600 Clifton Road, Atlanta, Georgia 30333, 1994); available on the Internet at < >. For general background see Institute of Medicine; Joshua Lederberg, Robert E. Shope, and Stanley C. Oakes, Jr., editors, Emerging Infections: Microbial Threats to Health in the United States (National Academy Press, Washington, DC, 1992).

(47)A gripping book not to read before trying to sleep is Laurie Garrett, The Coming Plague: Newly Emerging Diseases in a World Out of Balance (Farrar, Straus and Giroux, New York, 1994).

(48) Primary investigator, Dr. J. Richard Udry (University of North Carolina at Chapel Hill).