title: Are cancer registries unconstitutional?
abstract: Population-based cancer registration, mandated throughout the United States, is central to quantifying the breadth and impact of cancer. It facilitates research to learn what causes cancer to develop and, in many cases, lead to death. However, as concerns about privacy increase, cancer registration has come under question. Recently, its constitutionality was challenged on the basis of 1) the vagueness of statutory aims to pursue public health versus the individual privacy interests of cancer patients, and 2) the alleged indignity of one's individual medical information being transmitted to government authorities. Examining cancer registry statutes in states covered by the US National Cancer Institute's SEER Program and the US Centers for Disease Control and Prevention's National Program of Cancer Registries, we found that cancer registration laws do state specific public health benefits, and offer reasonable limits and safeguards on the government's possession of private medical information. Thus, we argue that cancer registration would survive constitutional review, is compatible with the civil liberties protected by privacy rights in the U.S., satisfies the conditions that justify public health expenditures, and serves human rights to enjoy the highest attainable standards of health, the advances of science, and the benefits of government efforts to prevent and control disease.
authors.affiliation: Northern California Cancer Center, Legal and Regulatory Affairs, Fremont, CA 94530, United States. rmclaugh@nccc.org
authors.forename: Robert H
authors.initials: RH
authors.lastname: McLaughlin
authors.forename: Christina A
authors.initials: CA
authors.lastname: Clarke
authors.forename: Lavera M
authors.initials: LM
authors.lastname: Crawley
authors.forename: Sally L
authors.initials: SL
authors.lastname: Glaser
mesh_terms: D003219:Confidentiality / Q000331:legislation & jurisprudence*; D006801:Humans; D019221:Mandatory Reporting; D009369:Neoplasms / Q000453:epidemiology; D011159:Population Surveillance; D015980:Public Health Practice / Q000331:legislation & jurisprudence*; D012042:Registries / Q000941:ethics; D018426:SEER Program / Q000331:legislation & jurisprudence; D014481:United States / Q000453:epidemiology