Measure passes to protect privacy of genetic data
5/21/2019, 8:05 p.m.
Illinois residents' genetic testing results may be protected soon under a proposal advanced by State Senator Jennifer Bertino-Tarrant. Bertino-Tarrant (D-Shorewood) passed House Bill 2189, which prohibits companies that provide direct-to-consumer commercial genetic testing such as ancestry.com and 23andMe, from sharing any test results with health or life insurance companies without the consumer's consent. "In the last couple of years, genetic testing has become easily accessible and affordable for local residents," Bertino-Tarrant said. "Will County residents should be able to rest assured that their personal health information will remain private as they make informed decisions to manage their health care." The number of people who have had their DNA analyzed with direct-to-consumer genetic genealogy tests more than doubled during 2017 and exceeded to 12 million in 2018. Last year, an estimated 1 in 25 American adults now have access to personal genetic data.
"We have the right and responsibility to ensure personal data is used responsibly," Bertino-Tarrant said. "As technology evolves it is imperative that laws advance with the needs of the people of Illinois." House Bill 2189 passed the Senate with unanimous support and now heads to the governor's desk for his signature.