The Right to Know and Privacy
by The Pew Environmental Health Commission

The Pew Environmental Health Commission was formed in 1999 with the charge of developing a blueprint to rebuild the nation’s public health defenses against environmental threats.  The Commission, made up of leaders representing the public policy, health industry, government, academic and nonprofit communities, designed a plan of action to build an integrated public health system capable of tracking and reducing environmental threats to the nation’s health.

The Commission strongly recommended that the public’s right to know about environmental threats to its health be a fundamental part of all efforts to strengthen the environmental health infrastructure. This recommendation was set out in detail in the context of the Commission’s four reports.  For example, a report describing America’s environmental health gap and possible ways to fill it proposed the establishment of a nationwide health tracking network.  The network was to be a means of obtaining useful information on environmental health threats and using it to inform consumers, communities, public health practitioners, researchers and policymakers on chronic diseases and related environmental hazards and population exposures. Such information was to provide the capacity to better understand, respond to and prevent chronic disease in the country.

Underlining its commitment to right-to-know, the Commission specifically stated that  the public has a right to know the status of its environmental health at the national, state and local levels. It further developed the idea by noting the importance of grounding the tracking network in community groups so that local concerns are adequately addressed in the design of the system, tracking data is readily accessible and acquired information is useful for local level activities. Moreover, as part of the right-to-know requirement of the tracking network, the Commission recommended that the EPA, CDC and Surgeon General should jointly develop a national Environmental Health Report Card that would give all Americans an annual overview of key hazards, exposures and health outcomes in order to gauge progress and shape national goals.

As part of its work, the Commission recognized that personal privacy is the legitimate flip side of right-to-know.  Its members declared that protecting privacy and confidentiality were critical to building a strong environmental health right-to-know program. (Privacy was defined as an individual’s desire to limit the disclosure of personal information while confidentiality was characterized as the restrictions or controls placed on sharing and releasing person information.)  To protect the privacy and confidentiality of individually identifiable health information, the Commission recommended the following principles:

• Recognize that it is largely possible to balance the protection of individually identifiable health information and the acquisition, storage and use of that information for environmental health purposes;

  
  

• Protect individuals’ privacy by ensuring the confidentiality of identifiable health information;

  
  

• Disclose only as much information as is necessary for the purpose in cases where the public health requires disclosure of identifiable information;

  
  

• Require that entities to which identifiable information has been disclosed take the same measures to ensure confidentiality that are taken by the disclosing agency;

  
  

• Utilize the best available organizational and technological means to preserve confidentiality of information (includes such measures as limiting access, staff training, agreements and penalties as well as updating of security measures);

  
  

• Provide individuals the opportunity to review, copy and request correction of identifiable health information.[1]

Contact the Pew Environmental Health Commission at http://pewenvirohealth.jhsph.edu/ regarding comments on this paper.

More information about health information privacy is available at the Health Information Privacy Website:

http://www.critpath.org/msphpa/privacy.htm

Additional written materials can be obtained from the CDC, or Professor Lawrence Gostin at the Georgetown University School of Law.  Dr. Gostin has written widely on health information privacy.

CDC Privacy Report (Available from CDC)

Lawrence O. Gostin, Zita Lazzarini, Kathleen M. Flaherty, Legislative Survey of State Confidentiality Laws, with Specific Emphasis on HIV and Immunization. Final Report Presented to the U.S. Centers to Disease Control and Prevention (1997).

Privacy Articles

Lawrence O. Gostin, Health Information Privacy, 80 Cornell L. Rev. 101-184 (1995).

Lawrence O. Gostin & Jack Hadley, Health Services Research: Public Benefits, Personal Privacy, and Proprietary Interests, 129 Annals of Internal Med. (in press).

Lawrence O. Gostin, Health Information and the Protection of Privacy: Ethical and Legal Considerations, 127 Annals of Internal Medicine 683-690 (1997).

Lawrence O. Gostin, Zita Lazzarini, Verla S. Neslund, Michael T. Osterholm, The Public Health Information Infrastructure: A National Review of the Law on Health Information Privacy, 275 J.A.M.A. 1921-1927 (1996).

Lawrence O. Gostin & Zita Lazzarini, Childhood Immunization Registries: A National Review of Public Health Information Systems and the Protection of Privacy, 274 J.A.M.A. 1793-1799 (1995).

Lawrence O. Gostin, Genetic Privacy, 23 J. Law, Med. & Ethics 320-330 (1995).

Lawrence O. Gostin, Joan Turek-Brezina, Madison Powers, Rene Kozloff, Ruth Faden, &  Dennis D. Steinauer, Privacy and Security of Personal Information in a New Health Care System, 270(20) J.A.M.A. 2487-2493 (1993).

Pew Environmental Health Commission, America’s Environmental Health Gap: Why the Country Needs a Nationwide Health Tracking Network, 2000.  Available electronically at: HYPERLINK "http://pewenvironhealth.jhsph.edu" http://pewenvironhealth.jhsph.edu or at: www.healthyamericans.org.