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."

How to Make ‘Immunity Passports’ More Ethical; Scientific American, February 24, 2021

Nicole Hassoun, Anders Herlitz , Scientific American; How to Make ‘Immunity Passports’ More Ethical

"In short, immunity passports should only be offered to people who pose very little risk to others, and have ethical immunity passport systems, we must allow some exceptions.These must include health and welfare exemptions so that people who cannot access vaccines for health reasons but need to work, attend school, travel and so forth can do so when the expected benefits exceed expected costs. If prospective travelers, or their family members, have serious economic, health or other needs, they should be able to secure a limited passport to access essential services—whether that requires going to work, traveling or attending school as long as they agree to take appropriate precautions (e.g., get tested, wear a mask, and social distance insofar as possible)."

On the ethics of documenting a pandemic; British Journal of Photography, April 9, 2020

 Hannah Abel-Hirsch, British Journal of Photography; On the ethics of documenting a pandemic

"How do you navigate the ethics of documenting a crisis where the best course of action is to stay home — what is the importance of photographing it versus the risk it may bring to subjects?

One of the fundamental aspects of democracy is press freedom. I am a journalist and filmmaker and I have a duty to consider how to ethically document the crisis. A month ago, in Italy, the only imagery circulating was that which depicted empty streets and people wearing masks. I felt part of the story was missing, and I took the time to examine how to cover it safely with the necessary protective gear, and to understand what would be the right time and location. The concern is always how you do it — the process — and how you tell the story."

ALA Executive Board recommends closing libraries to public; American Library Association (ALA), March 17, 2020

Press Release, American Library Association (ALA); ALA Executive Board recommends closing libraries to public

"The American Library Association (ALA) Executive Board released the following statement in support of libraries and library workers during the COVID-19 Pandemic:

"The ALA Executive Board unequivocally stands in support of the safety and well-being of library workers and the communities we serve," stated the board. "To protect library workers and their communities from exposure to COVID-19 in these unprecedented times, we strongly recommend that academic, public and school library leaders and their trustees and governing bodies evaluate closing libraries to the public and only reopening when guidance from public health officials indicates the risk from COVID-19 has significantly subsided. 

"It is very difficult for us to put forward this recommendation. Libraries pride themselves on being there during critical times for our communities. We are often the only institutions to remain open during times of crisis. Service and stewardship to our communities are core to our profession. 

"We have weighed the situation of our country and what has happened in other countries around the world. The health of our library workers and the communities we serve is of utmost and equal importance. Libraries are by design unable to practice social distancing to the degree recommended by the Centers for Disease Control and Prevention and other health authorities. Keeping libraries open at this time has the potential to harm communities more than help. We underscore the importance and need to come together in this crisis and commit to ensuring our libraries, which provide so many important services to our communities, do not serve as vectors for a fast-moving pandemic.

"Libraries are responding creatively and proactively to this crisis. School libraries in many states have closed along with schools and many have plans to provide online classes to students. Public libraries are making virtual resources available and considering other ways they can help during the crisis. Academic libraries are providing online services and access to resources. All libraries are working with their school administrators, governments, boards, and university administrations to determine critical services and closures following local directives. 

"Additionally, and in alignment with our companion organization, the ALA Allied Professional Association (APA), we encourage libraries to ensure that all library workers receive fully paid leave, including health coverage, while libraries are closed.

"Although closing a library is a local decision, we urge library administrators, local boards and governments to close library facilities until such time as library workers and our communities are no longer at risk of contracting or spreading the COVID-19 coronavirus.

"The ALA Executive Board is committed to supporting our library workers, ALA members, and the communities we serve during these challenging and uncertain times." 

For more information about ALA resources on COVID-19, visit http://www.ala.org/tools/atoz/pandemic-preparedness

About the American Library Association:

ALA is the foremost national organization providing resources to inspire library and information professionals to transform their communities through essential programs and services. For more than 140 years, ALA has been the trusted voice of libraries, advocating for the profession and the library’s role in enhancing learning and ensuring access to information for all. For more information, visit ala.org."

Consumer DNA Testing May Be the Biggest Health Scam of the Decade; Gizmodo, November 20, 2019

Ed Cara, Gizmodo; Consumer DNA Testing May Be the Biggest Health Scam of the Decade

"This test, as well as many of those offered by the hundreds of big and small DNA testing companies on the market, illustrates the uncertainty of personalized consumer genetics.

The bet that companies like 23andMe are making is that they can untangle this mess and translate their results back to people in a way that won’t cross the line into deceptive marketing while still convincing their customers they truly matter. Other companies have teamed up with outside labs and doctors to look over customers’ genes and have hired genetic counselors to go over their results, which might place them on safer legal and medical ground. But it still raises the question of whether people will benefit from the information they get. And because our knowledge of the relationship between genes and health is constantly changing, it’s very much possible the DNA test you take in 2020 will tell you a totally different story by 2030."

Facebook has been paying teens $20 a month for access to all of their personal data; Vox, January 30, 2019

Kaitlyn Tiffany, Vox; Facebook has been paying teens $20 a month for access to all of their personal data

"The shocking “research” program has restarted a long-standing feud between Facebook and Apple.

 

"Facebook, now entering a second year of huge data-collection scandals, can’t really afford this particular news story. However, it’s possible the company just weighed the risks of public outrage against the benefits of the data and made a deliberate choice: Knowing which apps people are using, how they’re using them, and for how long is extremely useful information for Facebook."

Facing Backlash, Chinese Scientist Defends Gene-Editing Research On Babies; NPR, November 28, 2018

Rob Stein, NPR; Facing Backlash, Chinese Scientist Defends Gene-Editing Research On Babies

"University of Wisconsin bioethicist Alta Charo, who helped organize the summit, issued an even harsher critique of He's work, calling it "misguided, premature, unnecessary and largely useless."

"The children were already at virtually no risk of contracting HIV, because it was the father and not the mother who was infected," she said.

"The patients were given a consent form that falsely stated this was an AIDS vaccine trial, and which conflated research with therapy by claiming they were 'likely' to benefit," Charo said. "In fact there is not only very little chance these babies would be in need of a benefit, given their low risk, but there is no way to evaluate if this indeed conferred any benefit."

She spoke after Harvard Medical School Dean George Daley alluded to He's claims as "missteps" that he worried might set back a highly promising field of research. "Scientists who go rogue carry a deep, deep cost to the scientific community," Daley said.

Still, Daley argued that He's experiment shouldn't tar the potential work of other scientists. "Just because the first steps into a new technology are missteps, doesn't mean we shouldn't step back, restart and think about a plausible and responsible path forward," Daley said.

"The fact that the first instance came forward as a misstep should in no way leave us to stick our heads in the sand and not consider the very, very positive efforts that could come forward," Daley said. "I hope we just don't stick our heads in the sand."

Daley stressed that the world hadn't yet reached a scientific consensus on how to ethically and safely use new gene-editing techniques to modify embryos that become babies.

But Daley argued that a consensus was emerging that "if we can solve the scientific challenges, it may be a moral imperative that it should be permitted." The most likely first legitimate use of gene-edited embryos would be to prevent serious genetic disorders for which there are no alternatives, Daley said.

"Solving and assessing these deep issues [is] essential," Daley says.

Daley also defended the fact that scientists have long relied on self-regulation to prevent the abuse of new technologies. He's claims represented "a major failure" that called for much stronger regulation and possibly a moratorium on such research, Daley said. "I do think the principle of self-regulation is defensible.""

Illinois Issues: The Battle Over Transparency And Privacy In The Digital Age; NPR Illinois, July 13, 2017

Daisy Contreras, NPR Illiois; Illinois Issues: The Battle Over Transparency And Privacy In The Digital Age

"Privacy experts like John Verdi from the Future of Privacy Forum says that he believes much of the debate between opponents and proponents comes from the nature of the topic, which is in of itself a complicated issue because of the patchwork of legislation across different states.

“It is a vastly complicated space, where you have potential benefits from data to consumers, to businesses, to the economy — to governments. And you also have real concrete privacy and security risks for individuals.”...

For the time being, some consumers and privacy advocates like Carolyn Parrish, just want website owners and app developers to establish consensus about what might be considered too much data sharing and to establish ground rules for transparency with consumers.  “Giving people greater visibility into what’s happening behind the scenes—it’s useful. Knowledge is helpful to people to help them make educated choices.”"