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."

No More Exposés in North Carolina; New York Times, 2/1/16

Editorial Board, New York Times; No More Exposés in North Carolina:

"The industry should welcome such scrutiny as a way to expose the worst operators. Instead, the industry’s lobbyists have taken the opposite approach, pushing for the passage of so-called “ag-gag” laws, which ban undercover recordings on farms and in slaughterhouses. These measures have failed in many states, but they have been enacted in eight. None has gone as far as North Carolina, where a new law that took effect Jan. 1 aims to silence whistle-blowers not just at agricultural facilities, but at all workplaces in the state. That includes, among others, nursing homes, day care centers, and veterans’ facilities.

Anyone who violates the law — say, by secretly taping abuses of elderly patients or farm animals and then sharing the recording with the media or an advocacy group — can be sued by business owners for bad publicity and be required to pay a fine of $5,000 for each day that person is gathering information or recording without authorization...

Activists who pose as employees to gain access to farming operations, the judge wrote, “actually advance core First Amendment values by exposing misconduct to the public eye and facilitating dialogue on issues of considerable public interest.”

As far back as the publication of “The Jungle,” which documented the horrific conditions inside Chicago meatpacking plants in the early 20th century, the public has relied on journalists and activists to expose dangerous abuses and misconduct by businesses."