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."

Who owns your cells? Legacy of Henrietta Lacks raises ethical questions about profits from medical research; Cleveland.com, August 18, 2023

Gretchen Cuda Kroen, cleveland.com; Who owns your cells? Legacy of Henrietta Lacks raises ethical questions about profits from medical research

"While the legal victory may have given the family some closure, it has raised concerns for bioethicists in Cleveland and elsewhere.

The case raises important questions about owning one’s own body; whether individuals are entitled to a share of the profits from medical discoveries derived from research on their own cells, organs and genetic material.

But it also offers a tremendous opportunity to not only acknowledge the ethical failures of the past and the seeds of mistrust they have sown, but to guide society toward building better, more trustworthy medical institutions, said Aaron Goldenberg, who directs the Bioethics Center for Community Health and Genomic Equity (CHANGE) at Case Western Reserve University."

Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World; Undark, February 24, 2022

DYNA ROCHMYANINGSIH, Undark; Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World

"Various ethics guidelines on health-related research — including UNESCO’s International Declaration on Human Genetic Data and international ethical guidelines published by the Council for International Organizations of Medical Sciences, or CIOMS, in collaboration with the World Health Organization — advise researchers to seek approval from an ethics committee in the host country. Such reviews are critical, bioethicists say, because cultural and social considerations of research ethics might vary between countries. In low-resource countries especially, ethics reviews are essential to protect the interests of participants and ensure that data are used in ways that benefit local communities.

Nowhere in Larena and Jakobsson’s paper, or in any of the subsequent publications based on the Philippines study, does the Uppsala team mention obtaining such an ethics approval in the Philippines — and Philippines officials say they never granted the team such an approval."

The Ethical Dilemmas Prompted By The Vaccine Rollout; FiveThirtyEight, February 5, 2021

 Anna Rothschild and Sinduja Srinivasan, FiveThirtyEight; The Ethical Dilemmas Prompted By The Vaccine Rollout

"Should you take a leftover dose of the COVID-19 vaccine? Should you pass up a dose if you think you don’t need it as much as someone else does? On this week’s episode of PODCAST-19, we talk to bioethicists to get their answers on these questions and more."

Triage and ventilator rationing not the only ethical issues in pandemic, bioethicists say; National Catholic Reporter, April 6, 2020

Heidi Schlumpf, National Catholic Reporter; Triage and ventilator rationing not the only ethical issues in pandemic, bioethicists say

"News of life-saving ventilators being rationed, hospitals issuing blanket "Do Not Resuscitate" orders and politicians suggesting that some human lives are expendable in service of the economy have highlighted the importance of an ethical framework for decision-making during the coronavirus pandemic.

What used to be theoretical, textbook exercises have become real-life dilemmas for overburdened or soon-to-be-overburdened health care systems.

But Catholic bioethicists say clinical triage decisions, while important, are only part of a number of broader ethical concerns, including preventative strategies such as paid sick leave, truthful communication from political leaders and assistance with payment for testing and treatment.

Concern for the common good and for the most vulnerable populations become even more urgent during a pandemic, Catholic ethicists told NCR. And preparedness and prevention are as much moral issues as are end-of-life decisions.

Nearly 1,400 bioethicists and health leaders said as much in a letter to the White House and U.S. Congress dated March 21. The letter was organized by the New York-based Hastings Center, a bioethics research institute, and included a number of prominent Catholic signatories."