The following websites will help you determine if your data collection efforts are subject to federal and state privacy, human subjects protection, and mandatory reporting requirements:
- The Department of Education (DOE) Family Policy Compliance Office provides information about requirements on privacy and parental consent. The Protection of Pupil Rights Amendment requires that written parental consent be obtained before students participate in any DOE-funded data collection effort that includes information on drug and alcohol use (as well as a range of other topics). If you are a DOE-funded site, it is a good idea to contact your project officer to discuss the amendment in detail. The Family Educational Rights and Privacy Act also requires schools to have written permission to release student records.
- The Department of Health and Human Services (HHS) Office for Human Research Protections (OHRP) is responsible for protecting human subjects in federally funded research. Under the Protection of Human Subjects Regulation, 45 Code of Federal Regulations (CFR) 46, human subjects of research conducted or supported by HHS are covered by a basic set of protections. The Federal Policy for the Protection of Human Subjects, known as the “Common Rule,” was issued by fifteen federal agencies and departments in 1991. The Common Rule is based on Subpart A of 45 CFR 46 and includes identical language in the separate regulations of those departments and agencies. OHRP provides a complete list of those departments and agencies. It also provides more information on federal law and regulations protecting human subjects in general (and children, in particular). For more information, access OHRP educational videos and an online tutorial.
- The Confidentiality of Alcohol and Drug Abuse Patient Records, 42 Code of Federal Regulations (CFR) 2 impose restrictions upon the disclosure and use of alcohol and drug abuse patient records which are maintained in connection with any federally assisted alcohol and drug abuse program.
- The National Institutes of Health issues Certificates of Confidentiality that allow those with access to research records to refuse to disclose identifying information on participants in any civil, criminal, administrative, legislative, or other proceedings, whether at the federal, state, or local level. These certificates may be granted for studies collecting information that, if disclosed, could have adverse consequences for subjects or damage their financial standing, employability, insurability, or reputation.
- The Child Welfare Information Gateway, formerly the National Clearinghouse on Child Abuse and Neglect Information and the National Adoption Information Clearinghouse, provides access to mandatory reporting requirements information and resources to help protect children and strengthen families. The Child Welfare Information Gateway, a service of HHS, also provides a state statutes search for all 50 states.