NAACCR Policy Statement 99-01: Confidentiality
The burden of cancer on US and Canadian populations is enormous. More than 1.2 million Americans will be newly diagnosed with cancer in 1999 and more than 560,000 Americans will die from the disease in the same year. In Canada, most recent statistics suggest that more than 129,000 Canadians will be newly diagnosed with cancer and more than 63,000 Canadians will die from the disease in 1999. The lifetime probability of being diagnosed with cancer is one in two for males and one in three for females. Nearly all persons in the United States and Canada are affected by the diagnosis, treatment, or care of a family member with cancer;
Population-based cancer surveillance and research are basic and fundamental activities in cancer control, reducing the disparities among populations in early detection, access to care, and receipt of state-of-the-art treatment. Cancer research is a requisite to the discovery of new prevention and treatment strategies, the very activities that will enable success in the war on cancer; In nearly all states and provinces, a newly diagnosed case of cancer is a reportable condition and cancer registration is required by law. Cancer patients may not choose not to be registered and may not remove their personal identities from cancer registry records. Facilities that service patients in the diagnosis or treatment of cancer may not choose not to participate in reporting. However, both patients and facilities are assured that their confidentiality will be protected. This must include the prevention of the release of their identities for legal purposes without their permission. Without this protection, compliance with cancer reporting statutes will diminish and the quality of the information reported about cancer patients will be adversely affected; Without complete and accurate cancer surveillance data, local health authorities will not have basic information to use for defining target populations for cancer control efforts, for identifying populations most likely to benefit from cancer screening and other early detection modalities, for developing sound public health policy that is derived from scientific fact, for prioritizing public health activities based on need or community burden, for responding to citizen concerns about disparate cancer burden, and for generating questions and hypotheses to be used in prioritizing and determining appropriate directions in research; Successful research cannot be achieved without participation of the public, both cancer patients and non-cancer patients (controls). Cancer patients must have the assurance that their voluntary participation will not result in violation of their privacy, protecting both the fact and details of their disease as well as additional information that they may be asked to divulge for research purposes; Information entered into evidence in legal proceedings becomes public record. The principle of protection of confidentiality is violated if the information is released without the patient's consent; For individual types of cancer, specific characteristics can be used or triangulated to produce unique records describing cases, even when the more obvious identifiers, such as name, address, or social security number (personal health number in Canada), are not part of the record. Many people, including judges and attorneys, are unfamiliar with how seemingly anonymous data items can be combined to deduce an individual's identity, especially in combination with other legally-accessible data sources. Redacting name, address, telephone number and social security number (personal health number in Canada) can still allow identification of individuals under certain circumstances; Population-based cancer registries are primarily funded through public dollars and these dollars are scarce and leave little resources for purposes other than registry operations; Legal proceedings involving cancer registries require substantial time and expense to produce information, to respond to repeated requests for the same information by multiple parties in the legal proceedings, to educate the legal professionals in the epidemiologic perspective, to correct misinterpretations of the data, and to ensure that promises made in court are actually upheld; Experience by at least one NAACCR member, the American Cancer Society, demonstrated that in one case data were conditionally released, and the recipients used the data beyond their original, permissible purpose, which was to use the information in a legal defense; and The uses, in the aforementioned instance, expanded into data reanalyses that did not follow the principles or guidelines for scientific inquiry, including sound scientific method, and appropriate dialogue within the scientific community to maximize the validity of the data results and interpretation, but rather released erroneous information directly to the lay public. This action required enormous resources by the American Cancer Society to re-analyze and to correct misrepresentation of the study findings.
Therefore, it is resolved by NAACCR, Inc. that:
The integrity of population-based central cancer registries must be maintained as a key resource to protect the public?s health and a key component of the public health surveillance system; The public health surveillance system must be exempted from restrictions on collection and retention of personal identifying information in medical privacy legislation; Personal identifiers for all cancer reports must be collected and retained in cancer registries without individual consent; and Data from cancer registries that would allow for the identification of individuals must be protected from disclosure in any legal proceedings. Position Approved by the Board of Directors on November 17, 1999