These companies, including 23andMe, Ancestor DNA and MyHeritageDNA, promise consumers the opportunity to learn about their ancestors and the genetic health risks of using simple cheek swabs and mailing tools. However, the security and privacy of the generated gene sequence are not always clear, and there are few laws regulating the behavior of companies. Medical ethics experts said that they praised Schumer's efforts.
Peter Pitts, chairman of the Center for Public Interest Medicine, said that genetic testing companies sell their test results to pharmacological companies and third-party laboratories. Pitts said that there are no names or other identifying information in the data, but truly anonymizing DNA is an arduous task-researchers have found that comparing anonymous DNA databases with public records can reveal the names and addresses of people behind gene sequences.
Pitts told Life Science that this information has some benefits, such as developing personalized drugs. However, due to the lack of security measures, these traps are approaching.
"If used properly, it will bring a good place for patients, but when there is an opportunity to abuse or extract money, criminals will quickly absorb it," he said. [Learning 10 the most destructive human behavior]
Anonymity and aggregation "Family genetic testing companies have different privacy policies. Usually, these policies require customers to agree to * * * share personally identifiable data, but they are usually allowed to sell or * * * share anonymous DNA information that has been deleted from their names or other identity information, or aggregate DNA information, including statistical data, such as having a specific disease risk.
Art Kaplan, a bioethicist at new york University School of Medicine, said that both kinds of information are worrying.
Anonymous DNA is not necessarily so anonymous, because genes are essentially the most recognizable information among all information. A study published in Science in 20 13 used two open genealogy databases, and found that researchers could correctly find people's surnames from their genetic data only in 12% to 18% of the time. If researchers know customers' surnames, years of birth and living conditions, they can comb the database and narrow down the genetic map that may belong to them to dozens.
In these genealogical databases, you can reveal the identity of a target and determine their genetic relatives, which is another problem of genetic data: your gene sequence is not unique to you. Kaplan said that exposing a person's genetic information may expose information about family risks. Kaplan said that you can get seven diseases from genetic tests.
"It may also start to affect your race," he told Life Science.
The ethnic database of genetic testing companies is very small, which is rare in the United States. Kaplan said that the test accuracy of these groups, including Korean Americans, Vietnamese Americans and Filipinos, may be biased. At the same time, if a group is tested in detail, it may make them look like a high-risk group for a specific disease, just because the data exists in race rather than other races. Kaplan said that this is the case for German Jewish women, who have been proved to have two breast cancer genes, namely BRCA 1 and BRCA 2, which are the most at risk. However, he said, this is partly due to the unique ancestors of Ashkenazi Jews, whose DNA has been thoroughly studied. Kaplan said that it is possible that other races are at higher risk, but it has not been tested. Ed was very specific. Kaplan said that in this sense, the aggregated data collected by companies like Kyle may mislead or even create a "genetic stereotype", while others are because there are not many rules restricting the work of domestic genetic testing companies. Pitts said that companies usually promise to ensure data security in privacy statements, but when they sell information to third parties, consumers can't know who these third parties are or what their security level may be. Similarly, Kaplan said that if a company itself is sold, its privacy policy can be completely revised.
"When I sent my DNA to 23andMe or agreed to give it to Columbia Medical College, there was no constraint. Well, it will always be anonymous, "he said.
Kaplan and Pete both say that the hand may be bad. There is a law, namely the Genetic Information Non-discrimination Act (GINA) in 2008, which aims to prevent insurance companies from refusing to provide insurance for healthy people based on their genetic inclination, and to prevent employers from using genetic information to make recruitment, dismissal or promotion decisions. Kaplan said Gina had a leak. It does not apply to companies with less than 15 employees, nor does it apply to schools. Nor does it apply to life or disability insurance. A bill recently proposed by the U.S. House of Representatives, House Bill 13 13, will overturn Gina's protective measures in the workplace and allow the workplace health plan to limit the rewards for employees who refuse to provide genetic data.
"If we don't like the racial analysis at the airport, we will hate the genetic analysis in the workplace," Pitts said.
Pitts said that specific rules may help, including severe punishment or even imprisonment for hacking or stealing genetic information. "。 Kaplan said that severe punishment measures should also be formulated for anyone who tries to submit a DNA test without the consent of the client. At the same time, he said, the conditions agreed by consumers when giving up data should be permanent, even if the data or company changes hands,
Genetic information will not spread everywhere, so it is time for the law to keep up with this technology. He said: "This only means thoughtful supervision and thoughtful consumer education.