Glossary

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De-identification/Re-identification

"The process of de-identification, by which identifiers are removed from health information, mitigates privacy risks to individuals and thereby supports the secondary use of data for comparative effectiveness studies, policy assessment, life sciences research, and other endeavors." A partial list of the types of identifying information that must be removed include names; geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP code, and their equivalent geocodes; all elements of dates (except year) for dates that are directly related to an individual, including birth date, admission date, discharge date, death date; telephone numbers; vehicle identifiers and serial numbers, including license plate numbers; fax numbers; device identifiers and serial numbers; email addresses; web Universal Resource Locators (URLs);  Internet Protocol (IP) addresses; Social Security numbers; medical record numbers; biometric identifiers, including finger and voice prints; health plan beneficiary numbers; full-face photographs and any comparable images; account numbers; and certificate/license numbers. ("De-identification and its Rationale" and "The De-Identification Standard" from Guidance Regarding Methods for De-identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability (HIPAA) Privacy Rule, Health Information Privacy, US Department of Health and Human Services. Accessed May 7, 2018). "Re-identification is the process by which anonymized personal data is matched with its true owner." ("Re-identification – Background." Electronic Privacy Information Center – EPIC. Accessed May 7, 2018). 

Direct-to-Consumer (DTC) Tests

"Traditionally, genetic tests have been available only through healthcare providers such as physicians, nurse practitioners, and genetic counselors. Healthcare providers order the appropriate test from a laboratory, collect and send the samples, and interpret the test results. Direct-to-consumer genetic testing refers to genetic tests that are marketed directly to consumers. This form of testing, which is also known as at-home genetic testing, provides access to a person’s genetic information without necessarily involving a doctor or insurance company in the process." ("What is Direct-to-consumer Genetic Testing?" Genetics Home Reference, US National Library of Medicine. Accessed April 18, 2018).

Duty to Recontact

"The term 'duty to recontact' refers to the possible ethical and/or legal obligation of genetics service providers to recontact former patients about advances in research that might be relevant to them." (JL Fitzpatrick et al. The Duty to Recontact: Attitudes of Genetics Service Providers. The American Journal of Human Genetics 1999;64(3):852-860).

Duty to Warn/Privilege to Warn

The duty to warn calls for a clinician or reseacher to "warn those known to be at risk of avoidable harm from a genetically transmissable condition." Privilege to warn refers to the conditions under which doctors can disregard traditional standards of confidentiality; it's "a discretionary right to act in a manner that would otherwise give rise to legal liability." Because family members share DNA, if a relative doesn't reveal relevant genetic information to family members, disclosure is "justified if the information reveals that [a] relative is at a substantially higher risk of suffering from a serious and otherwise undetected genetic disorder and if treatment or prevention is available." (American Society of Human Genetics. Professional Disclosure of Familial Genetic Information. American Journal of Human Genetics 1998;62:474–483).