Declaration of Helsinki revised to modernize research ethics standards; American Medical Association (AMA), November 6, 2024

American Medical Association (AMA); Declaration of Helsinki revised to modernize research ethics standards

"The World Medical Association (WMA) has updated its cornerstone ethical principles for medical research to modernize protections and reinforce respect for the rights and interests of human participants, while including new language on global justice, public health, vulnerability and consent for personal data collection and reuse.

For 60 years, these principles—dubbed the Declaration of Helsinki for the city in Finland where WMA members assembled to formally adopt them—have guided ethical conduct for medical research involving human participants on a global scale. 

The WMA General Assembly, whose constituent members represent more than 10 million physicians, recently met to adopt additional revisions crafted by an AMA-led work group from 19 countries. Through eight regional and topical meetings on many continents and two global public-comment periods, the work group gathered feedback from other experts and stakeholders including researchers, patients, bioethicists, regulators, medical leaders and others.

The AMA delegation to the World Medical Association plays a major role in proposing and authoring global policy issues including medical ethics, access to high-quality medical care, the physician workforce, public health, medical education, and advocacy for physicians’ and patients’ rights. As the predominant U.S. medical association, the AMA is the only national medical association eligible for membership in the World Medical Association, which was founded in 1947 in the wake [sic, of] involvement by physicians in medical atrocities during World War II.

The landmark amendments to the Declaration of Helsinki highlight the commitment “to reinforcing the ethical principles that guide medical research involving human participants, to safeguard patient rights and to ensure the integrity of scientific studies,” said WMA President Ashok Philip, MD, in a statement."

Peter Buxtun, whistleblower who exposed Tuskegee syphilis study, dies aged 86; Associated Press via The Guardian, July 15, 2024

 Associated Press via The Guardian; Peter Buxtun, whistleblower who exposed Tuskegee syphilis study, dies aged 86

"Peter Buxtun, the whistleblower who revealed that the US government allowed hundreds of Black men in rural Alabama to go untreated for syphilis in what became known as the Tuskegee study, has died. He was 86...

Buxtun is revered as a hero to public health scholars and ethicists for his role in bringing to light the most notorious medical research scandal in US history. Documents that Buxtun provided to the Associated Press, and its subsequent investigation and reporting, led to a public outcry that ended the study in 1972.

Forty years earlier, in 1932, federal scientists began studying 400 Black men in Tuskegee, Alabama, who were infected with syphilis. When antibiotics became available in the 1940s that could treat the disease, federal health officials ordered that the drugs be withheld. The study became an observation of how the disease ravaged the body over time...

In his complaints to federal health officials, he drew comparisons between the Tuskegee study and medical experiments Nazi doctors had conducted on Jews and other prisoners. Federal scientists did not believe they were guilty of the same kind of moral and ethical sins, but after the Tuskegee study was exposed, the government put in place new rules about how it conducts medical research. Today, the study is often blamed for the unwillingness of some African Americans to participate in medical research.

“Peter’s life experiences led him to immediately identify the study as morally indefensible and to seek justice in the form of treatment for the men. Ultimately, he could not relent,” said the CDC’s Pestorius."

Class explores how media impacts perceptions of health issues; University of Pittsburgh, University Times, July 11, 2024

MARTY LEVINE, University of Pittsburgh, University Times; Class explores how media impacts perceptions of health issues

"Communicating a message through storytelling, and not the mere recitation of facts, is key to public health communication, and Hoffman collaborates often with the Norman Lear Center at the University of Southern California, whose “Hollywood, Health and Society” project has conducted research on everything from “Increases in calls to the CDC National STD and AIDS hotline following AIDS-related episodes in a soap opera” to “The Impact of Food and Nutrition Messages on The Daily Show with Jon Stewart.” It also provides consultants to shows from “Breaking Bad” to “Black-ish,” and a Lear Center rep spoke in Hoffman’s class.

Hoffman was recently lead author on a published overview of current research evidence on the media and health, which found that “health storylines on fictional television influence viewers.”...

Pitt Public Health was the leader in developing the Salk vaccine for polio, she points out. Public health education and media literacy can be a sort of vaccination against misinformation, she says: “We often talk about it as inoculation. Misinformation is not going away. How can we make people less susceptible to it?”"

‘The situation has become appalling’: fake scientific papers push research credibility to crisis point; The Guardian, February 3, 2024

 Robin McKie, The Guardian; ‘The situation has become appalling’: fake scientific papers push research credibility to crisis point

"Tens of thousands of bogus research papers are being published in journals in an international scandal that is worsening every year, scientists have warned. Medical research is being compromised, drug development hindered and promising academic research jeopardised thanks to a global wave of sham science that is sweeping laboratories and universities.

Last year the annual number of papers retracted by research journals topped 10,000 for the first time. Most analysts believe the figure is only the tip of an iceberg of scientific fraud."

A Plea from Cleveland Clinic; December 21, 2021

12/21/21 email from Cleveland Clinic:

A Plea from Cleveland Clinic

"This past month has been sobering for many of us in healthcare. Nearly two years after the COVID-19 pandemic began, we’re seeing some of the highest volumes of patients with the disease in hospitals throughout the Midwest.

"Here at Cleveland Clinic, we’re caring for more than 800 patients with COVID-19 at our Ohio hospitals. Of these patients, more than 200 are in the intensive care unit. The majority of these patients are unvaccinated.  

Our Ohio emergency departments are filled. We have people waiting to get into our hospitals. Neighboring hospitals in our communities are facing the same issues. 

We’ve had to postpone many non-urgent surgeries in Ohio as we try to leave enough space for patients with COVID-19. Our physicians, nurses and caregivers are working around-the-clock to care for these sick patients. They are exhausted.  

Today, we come to you with a plea. Get vaccinated. Please. Whether you are due for your booster shot, undecided about getting your child vaccinated or have been leery of the vaccine all along. The science is clear. Vaccines save lives. Please, get vaccinated.

For those of you who have lost a loved one to COVID-19 this year, we extend our deepest sympathies. We feel your loss. We share in your grief. We, too, are heartbroken.

The only way we can get through this is together. Please do your part for yourself, your family and your community. Get vaccinated. Wear your mask, wash your hands and stay home if you're feeling ill. 

Cleveland Clinic will always be here for you when you need compassionate, high-quality care. The sun will rise tomorrow morning, and with it will bring renewed hope for a better day. 

We wish you and yours a joyous holiday season & a happy and healthy New Year."

Dysfunctional websites are making it harder for Americans to get vaccinated. Here’s how to fix that.; The Washington Post, March 31, 2021

Drew Altman , The Washington Post; Dysfunctional websites are making it harder for Americans to get vaccinated. Here’s how to fix that.

"Another useful supplement to more consumer-friendly websites would be an 800 number, staffed in multiple languages, with real people answering to help those who aren’t web savvy make appointments. In addition to friends and family helping each other, Facebook groups and apps are springing up to guide people through the website mazes. But a lot of Americans are not tech savvy. Many have sluggish Internet, have only a handheld device or are not online at all. People shouldn’t be penalized for not being plugged in. Many Americans need a human being to help them. A person answering an 800-number would be better than no real-time help, as is often the case today. The media could hold state officials’ feet to the fire if the number works poorly."

 

San Francisco recruits army of social workers, librarians and investigators to track Covid-19; The Guardian, May 1, 2020

Maanvi Singh , The Guardian; San Francisco recruits army of social workers, librarians and investigators to track Covid-19

"San Francisco has assembled an army of librarians, social workers, attorneys, investigators and medical students to find and warn anyone and everyone who may have been exposed to Covid-19...

Immigrant communities are justifiably worried that each time they share information about their status and location, “it will come back to haunt them,” Hayes-Bautista said. “It makes sense that people are scared.”...

San Francisco has similarly publicized that the contact tracing is “voluntary, confidential, and culturally and linguistically appropriate. Immigration status will have no bearing on these conversations.”"

Ethical practice in isolation, quarantine & contact tracing; American Medical Association (AMA), April 28, 2020

American Medical Association (AMA); Ethical practice in isolation, quarantine & contact tracing

"Contact tracing and isolation or quarantine of sick or exposed individuals are among the most effective tools to reduce transmission of infectious disease. Yet like many public health activities it raises concerns about appropriately balancing individual rights, notably privacy and confidentiality, with protecting the health of the community. The AMA Code of Medical Ethics provides guidance to help physicians strike this balance when they act in a public health capacity. 

Opinion 8.11, “Health promotion and preventive care,” provides that “physicians who work solely or primarily in a public health capacity should uphold accepted standards of medical professionalism by implementing policies that appropriately balance individual liberties with the social goals of public health policies.” That includes notifying public health authorities when physicians “notice patterns in patient health that may indicate a health risk for others.”

In keeping with Opinion 8.4, “Ethical use of quarantine & isolation,” physicians should also educate patients and the public about public health threats, potential harm to others and the benefits of quarantine and isolation, and should encourage voluntary adherence. Physicians should support mandatory measures when patients fail to adhere voluntarily."

Do I sound sick to you? Researchers are building AI that would diagnose COVID-19 by listening to people talk.; Business Insider, April 30, 2020

Aaron Holmes, Business Insider; Do I sound sick to you? Researchers are building AI that would diagnose COVID-19 by listening to people talk.

"Analyzing people's speech, coughing, and breathing patterns as a diagnostic tool isn't new — tussiphonography, or the study of cough sounds, has been around for decades. Now, AI researchers are emboldened by early reports from doctors that COVID-19 appears to have unique effects on patients' coughing and speech...

To give people an incentive to donate voice audio, Singh's lab initially published a rough AI tool online that would predict whether people have a higher chance of being COVID-19 positive using voice samples, along with a disclaimer that the tool wasn't giving real medical advice. But within 48 hours, Carnegie Mellon forced the lab to take down the online test, which could have run afoul of FDA guidelines and be misinterpreted by people regardless of the disclaimer.

"It's a perfectly valid concern, and my whole team had not thought of that ethical side of things," Singh said. "The other side is that hopefully the COVID pandemic will pass, and once it passes, hopefully it will never come back. So if we don't get the data now, we're never going to have data for research.""

Connecticut town tests 'pandemic drone' to find fevers. Experts question if it would work.; NBC News, April 22, 2020

Minyvonne Burke, NBC News; Connecticut town tests 'pandemic drone' to find fevers. Experts question if it would work.

"A Connecticut police department said it plans to begin testing a "pandemic drone" that could detect whether a person 190 feet away has a fever or is coughing.

But an expert on viruses and a privacy advocate question whether such technology can work and, if it does, whether it would help in controlling the spread of the coronavirus."

The Ethics of NOW from Home: “Privacy versus Public Health in a Pandemic: What are the ethical tradeoffs?”; The Kenan Institute For Ethics at Duke University, April 23, 2020 at 7 PM

The Kenan Institute For Ethics at Duke University; The Ethics of NOW from Home: “Privacy versus Public Health in a Pandemic: What are the ethical tradeoffs?”

"The Ethics of Now with Adriane Lentz-Smith continues from home with a series of brief, thoughtful and timely conversations about the ethical dilemmas of this historic moment.

This week, join Professor Lentz-Smith and Washington and Lee law and cyber ethics expert, Margaret Hu for a conversation about the ethical challenges of privacy during a pandemic: “Privacy versus Public Health in a Pandemic: What are the ethical tradeoffs?” 7:00pm Thursday, April 23, 2020."

Register Now on Zoom

Free Access to Intellectual Property is Crucial in Mitigating The COVID-19 Pandemic; News18, April 9, 2020

Simantini Dey, News18; Free Access to Intellectual Property is Crucial in Mitigating The COVID-19 Pandemic

"Furthermore, sharing intellectual property among members of academia is also important, so that the invention of a working vaccine can be accelerated, and more can be discovered about this potent virus. 

To ensure such co-operation, a group of scientists, lawyers, entrepreneurs and individuals have come together and started the 'Open COVID pledge' initiative. The organisations, institutions and universities who take the 'Open COVID Pledge' will voluntarily make the commitment of sharing their Intellectual Property related to COVID-19, thereby reducing information barrier. 

So far, Intel, Mozilla and Creative Commons have publically taken the Open COVID pledge. Harvard, MIT and Stanford have also agreed to this initiative. The University of Utah (Centre for Law and Biological Sciences), and Montreal Neurological Institute-Hospital are among some of the other institutions that have endorsed the pledge.

The current global healthcare crisis has brought to sharp focus the need to review patent laws of pharmaceutical products and how it should be reframed in case of a pandemic, or epidemic in future."

Library workers fight for safer working conditions amid coronavirus pandemic; NBC News, April 8, 2020

Olivia Solon, NBC News; Library workers fight for safer working conditions amid coronavirus pandemic

"Despite the American Library Association recommending in a statement March 17 that libraries close to the public, many librarians and support staff are still being asked to travel to work or risk being laid off, organizers say, even though many services could be delivered remotely.

Libraries in states across the country, including in New York, Iowa, Florida, California and Minnesota, have started offering curbside pickups to reduce contact between workers and patrons. Organizers believe this puts librarians at an unnecessary risk...

Library staff, particularly those in urban areas, spend a lot of time helping people apply for jobs, housing and government services that have shifted online -- services that will be more critical than ever when the pandemic is over and libraries reopen.

“Libraries are used by poor people, homeless people and others with a need for basic social services that have been destroyed over the years,” Macrina said. “It’s heartbreaking to take another necessary service away from their lives, but we have to do it because it’s a life or death situation.”"

Why do we keep treating China as a source of reliable information?; The Washington Post, April 7, 2020

Isaac Stone Fish

, The Washington Post; Why do we keep treating China as a source of reliable information?

"The Chinese Communist Party manipulates its statistics. This is neither an opinion nor a revelation: it’s a simple fact, critical to understanding China today. Chairman Xi Jinping demands that Chinese journalists prioritize loyalty to the Party over truth or accuracy. Li Keqiang, who now runs China’s economy as the premier, once smilingly told the U.S. ambassador that most Chinese statistics are “for reference only,” and that statistics on gross domestic product especially are “man-made.”

Up until a few months ago, this felt like a domestic Chinese issue. Sure, American investment firms have always struggled with finding accurate data. American journalists have sometimes repeated misleading Chinese statistics. But the stakes are far higher today. American media outlets should add an asterisk after Chinese statistics, to inform readers that the numbers they are reading cannot be verified, and should therefore be questioned.

Why? In the coronavirus era, Chinese statistics endanger Americans. The coronavirus outbreak originated in China, and the country faced the earliest and possibly the worst ravaging from the disease. Misunderstanding the speed at which coronavirus spread in China and the current rate of infection there impairs understanding of how the disease affects Americans. Major American news outlets such as the The Post have done an excellent job covering China and the coronavirus. And yet, just over the past week, major outlets — including, among others, Reuters, The Post and Bloomberg — have occasionally reported Chinese statistics without mentioning or even implying their unreliability."

SLAPP Suit Filed Against Fox News Over Awful & Dangerous COVID-19 Coverage; TechDirt, April 6, 2020

Mike Masnick, TechDirt; 

SLAPP Suit Filed Against Fox News Over Awful & Dangerous COVID-19 Coverage

"As despicable and awful as Fox News' coverage has been, it's all been protected free speech."

Artificial Intelligence and COVID-19: How Technology Can Understand, Track, and Improve Health Outcomes; Stanford University, April 2, 2020

Shana Lynch, Stanford University; Artificial Intelligence and COVID-19: How Technology Can Understand, Track, and Improve Health Outcomes

"On April 1, nearly 30 artificial intelligence (AI) researchers and experts met virtually to discuss ways AI can help understand COVID-19 and potentially mitigate the disease and developing public health crisis.

COVID-19 and AI: A Virtual Conference, hosted by the Stanford Institute for Human-Centered Artificial Intelligence, brought together Stanford faculty across medicine, computer science, and humanities; politicians, startup founders, and researchers from universities across the United States.

“In these trying times, I am especially inspired by the eagerness and diligence of scientists, clinicians, mathematicians, engineers, and social scientists around the world that are coming together to combat this pandemic,” Fei-Fei Li, Denning Family Co-Director of Stanford HAI, told the live audience.

Here are the top-line takeaways from the day. Visit HAI’s website for more in-depth coverage or watch the full conference video."

Russian media ‘spreading Covid-19 disinformation’; The Guardian, March 18, 2020

Jennifer Rankin, The Guardian; Russian media ‘spreading Covid-19 disinformation’ 

Leaked EU report says pro-Kremlin outlets seeking to aggravate public health crisis

"“Whoever is spreading the disinformation is essentially playing with people’s lives,” Stano said. “Every responsible social media or media user should be aware of this: that there is a lot of misinformation circulating around … Double check, triple check, go to a media you really trust and look at the sources.”"

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."

Column: COVID-19 could kill the for-profit science publishing model. That would be a good thing; Los Angeles Times, March 3, 2020

Michael Hiltzik, Los Angeles Times; Column: COVID-19 could kill the for-profit science publishing model. That would be a good thing

"The current crisis has demonstrated the value of open access to research, as well as the drawbacks of secrecy."

How Pitt is Preparing for the Spread of the Coronavirus; Pitt Wire, February 27, 2020

Pitt Wire; How Pitt is Preparing for the Spread of the Coronavirus

"The University of Pittsburgh continues to monitor the spread of the coronavirus disease, COVID-19, and is taking steps to respond to community needs. As of Feb. 27, no cases of COVID-19 have been reported in Pennsylvania. While the Centers for Disease Control and Prevention (CDC) has stated that the individual immediate health risk to those in the United States is currently low, communities should prepare for the coronavirus to spread. 

Keeping our community informed

Since the emergence of the virus in December 2019, campus health and public safety leaders have coordinated closely with the Allegheny County Health Department and Pennsylvania Department of Health and are following guidance from the CDC and World Health Organization.
Pitt encourages members of the University community to visit the Public Safety and Emergency Management website, which remains a centralized and reliable source for information on this issue. “Knowing where to find reliable information is important for community members,” said Molly Stitt-Fischer, the University’s biosafety officer. “As the health and scientific communities learn more as the situation continues to change very quickly, access to the most current guidance is critical.”