NRPM: Standards for Privacy of Individually Identifiable Health Information. Cancer


The societal burden of disease imposed by cancer is indisputable. Cancer is the second leading cause of death in the US 20, exceeded only by heart disease. In 1999, 1.38 million new cancer cases will be diagnosed, as well as 900,000 new basal and squamous skin cell cancers. 21 The National Cancer Institute estimates that the overall cost of cancer is $104 billion; $35 billion in direct medical cost, $12 billion for morbidity costs (cost of lost productivity) and $57 billion for mortality costs. 22

Among the most important elements in the fight against cancer are screening, early detection and treatment of the disease. However, however, many patients are concerned that some screening procedures will make them vulnerable to discrimination by insurers or employers. These privacy concerns have been cited as a reason patients do not seek early treatment for diseases such as cancer. As a result of forgoing early screening, cancer patients may ultimately face a more severe illness. For example, half of new diagnoses occur among types of cancer for which screening is available. Based on this research, studies show that if Americans participated in regular cancer screening, the rate of survival among patients who have screening-accessible cancers could increase to 95 percent. 23

Approximately 184,300 women will be diagnosed with breast cancer this year 24, and 25,000 women will be diagnosed with ovarian cancer 25. In the same year, almost 44,000 women will die of breast cancer, 26 and 14,500 will die from ovarian cancer. 27 Early detection of these cancers could have a significant impact on reducing loss due to disability and death. For example, only 24 percent of ovarian cancers are diagnosed in the early stages. Of these, approximately 90 percent of patients survive treatment. The survival rate of women who detect breast cancer early is similarly high; more than 90 percent of women who detect and treat breast cancer in its early stages will survive. 28

Researchers have developed screening techniques to identify breast, ovarian, and colon cancers, and tests have been developed to identify the presence or absence of cellular abnormalities that may lead to cancer. Despite these technological advances, the principle of patient autonomy requires that patients must decide for themselves if they will submit to screening procedures. Many individuals fear that employers and insurers will use cancer screening to discriminate against them. Several studies illustrate that persons with and without cancer fear discrimination. Thus, despite the potential benefits that early identification of cancer may yield, many researchers find that patient concerns regarding the confidentiality of cancer screening may prevent them from requesting the test, and result in disability or loss of life.