Their DNA Hides a Warning, but They Don’t Want to Know What It Says; The New York Times, January 21, 2022

 Gina Kolata, The New York Times ; Their DNA Hides a Warning, but They Don’t Want to Know What It Says

"Benjamin Berkman, a bioethicist at the National Institutes of Health, said that, in his view, the benefits of telling participants about genetic findings that can be treated or prevented greatly outweighed the risk that the participants might be frightened or fail to follow up.

“These are important pieces of information that can be lifesaving,” he said.

But not all biobanks give subjects the chance to receive health warnings.

At Vanderbilt, Dr. Clayton said, she volunteered genetic information to a biobank whose participants have been de-identified — all names and other personal information are stripped from the data. It also has other protections to prevent individuals in the bank from being found. While she happily contributed to the research, Dr. Clayton said, she is glad her data can’t be traced and that no one will call her if they find something that may be worrying.

“I don’t want to know,” she said."

Opinion: After a rape survivor’s arrest, it’s time to rethink genetic databases; The Washington Post, February 17, 2022

Jennifer King, The Washington Post,; Opinion: After a rape survivor’s arrest, it’s time to rethink genetic databases

"Jennifer King is a privacy and data policy fellow at the Stanford Institute for Human-Centered Artificial Intelligence...

This episode offers a glimpse of the concerns over privacy — as well as matters such as consent to data collection — that will arise as genetic information is stored in ever-greater amounts, and as governments take an ever-greater interest in exploiting it."

AMA calls for privacy guidelines governing mail-order DNA tests; American Medical Association (AMA), November 16, 2021

American Medical Association (AMA); AMA calls for privacy guidelines governing mail-order DNA tests

"Taking a cheek swab and sending it to a mail-order DNA testing company takes only a few minutes, but the information might live on forever—and become widely available.

At its Interim Special meeting, the American Medical Association (AMA) House of Delegates expressed concern that the privacy laws governing genetic information do not apply to these over-the-counter tests. The AMA will work with federal agencies to strengthen the privacy safeguards.

“People curious about their ancestry shouldn’t be worried that the data extracted from saliva will be shared,” said Thomas J. Madejski, M.D., a member of the AMA Board of Trustees. “This can have serious consequences, and again highlights the need to demand privacy for health care records, even seemingly innocuous ones.”...

While federal law prevents health insurance companies and employers from discriminating based on genetic information, these restrictions do not apply to life, disability, or long-term care insurance companies, which can result in insurance application rejections. Users of consumer genetic testing should be advised of the potential risks of their participation.

The AMA will advocate to add long-term care, life, and disability insurance to the federal law overseeing genetic testing. The AMA also will support privacy standards that would prohibit pharmaceutical companies, biotechnology companies, universities, and other entities with financial ties to genetic testing companies from sharing identified information without the consent of the tested individual."

China Uses DNA to Track Its People, With the Help of American Expertise; The New York Times, February 21, 2019

Sui-Lee Wee, The New York Times;

China Uses DNA to Track Its People, With the Help of American Expertise

The Chinese authorities turned to a Massachusetts company and a prominent Yale researcher as they built an enormous system of surveillance and control.

"Mr. Imin was one of millions of people caught up in a vast Chinese campaign of surveillance and oppression. To give it teeth, the Chinese authorities are collecting DNA — and they got unlikely corporate and academic help from the United States to do it."

DNA testing service MyHeritage says 92 million customer email addresses were exposed; The Washington Post, June 5, 2018

Hamza Shaban, The Washington Post; DNA testing service MyHeritage says 92 million customer email addresses were exposed

"One of the world's leading DNA-testing companies recently disclosed that a researcher had found on a private server the email addresses and hashed passwords of every customer that had signed up for its service.

MyHeritage said Monday in a blog post that the breach involved roughly 92 million user accounts that were created through October of last year.

The company said the breach occurred on October 26, 2017. But the service did not learn about the incident until Monday, more than seven months later."

'We are all mutants now': the trouble with genetic testing; Guardian, July 18, 2017

Carrie Arnold, Guardian; 'We are all mutants now': the trouble with genetic testing

"To get a better handle on all the variation in humans, scientists are going to need to sequence tens of millions of people. And the only way to ever get these kinds of large numbers is by sharing data. But regardless of how good the databases get, and how many people have their genomes sequenced, uncertainty will never completely go away."

Employees who decline genetic testing could face penalties under proposed bill; Washington Post, March 11, 2017

Lena H. Sun, Washington Post; Employees who decline genetic testing could face penalties under proposed bill

"Employers could impose hefty penalties on employees who decline to participate in genetic testing as part of workplace wellness programs if a bill approved by a U.S. House committee this week becomes law.

In general, employers don't have that power under existing federal laws, which protect genetic privacy and nondiscrimination. But a bill passed Wednesday by the House Committee on Education and the Workforce would allow employers to get around those obstacles if the information is collected as part of a workplace wellness program."