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."

University of Pittsburgh Nondiscrimination Policy Statement, 10/31/16

University of Pittsburgh Nondiscrimination Policy Statement:

[Kip Currier: Noteworthy to see "genetic information" included in Pitt's 10/31/16 Nondiscrimination Policy Statement, copied below. With advances in genome sequencing and the proliferation of DNA testing services for consumers, it makes sense that this would be included in organizational policies like Pitt's.]

"The University of Pittsburgh, as an educational institution and as an employer, values equality of opportunity, human dignity, and racial/ethnic and cultural diversity and inclusion. Accordingly,as explained in Policy 07-0l-03, the University prohibits and will not engage in discrimination or harassment on the basis of race, color, religion, national origin, ancestry, sex, age, marital status, familial status, sexual orientation, gender identity and expression, genetic information, disability, or status as a veteran.

The University also prohibits and will not engage in retaliation against any person who makes a claim of discrimination or harassment or who provides information in such an investigation.

Further, the University will continue to take affirmative steps to support and advance these values consistent with the University’s mission.

This policy applies to admissions, employment, access to and treatment in University programs and activities.

This is a commitment made by the University and is in accordance with federal, state, and/or local laws and regulations."