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."

Recognize Those Who Inspire Others to Uphold Ethical Principles; IEEE Spectrum, April 26, 2023

 SHERRY LINDBAK, IEEE Spectrum; Recognize Those Who Inspire Others to Uphold Ethical Principles 

"Do you know someone who has risen above others in demonstrating high standards of ethics and integrity? Or do you belong to an organization that has inspired others to share a vision of extraordinary ethical principles and practices? If so, IEEE wants to honor and celebrate their contributions.

The IEEE Ethics and Member Conduct Committee is now accepting nominations for this year’s IEEE Award for Distinguished Ethical Practices. The annual award recognizes an IEEE member, or an organization employing IEEE members, for exemplary ethical behavior or persuasive advocacy of ethical practices.

Nominators will be asked to explain:

• What situation was happening (or not happening) that caused the nominee to believe it was unethical?
• In what ways did the nominee demonstrate ethical leadership, courage, innovation, or honor to make the situation better?
• What was the overall impact of the nominee’s actions?

The deadline for nominations is 31 May. The recipient will be announced in November.

For more information, including eligibility requirements, and to access the nomination form, visit the EMCC-Award web page or write to ethics@ieee.org."

WHO kicks off deliberations on ethical framework and tools for social listening and infodemic management; World Health Organization (WHO), February 10, 2023

World Health Organization (WHO) ; WHO kicks off deliberations on ethical framework and tools for social listening and infodemic management

"WHO has convened a panel of experts to discuss ethical considerations in social listening and infodemic management. The aim of the ethics expert panel is to reach a consensus on ethical principles for social listening and other infodemic management activities and provide recommendations for health authorities and researchers.

The panel brings together experts from academia, health authorities, and civil society, with a wide range of expertise such as in biomedical ethics, data privacy, law, digital sociology, digital health, epidemiology, health communication, health promotion, and media studies.

An infodemic is an overabundance information, including misinformation, that surges during a health emergency. During a health emergency, people seek, receive, process and act on information differently than in other times, which makes it even more important to use evidence-based strategies in response. Infodemic management practice, underpinned by the science of infodemiology, has rapidly evolved in the recent years. Tools and experience that were developed during COVID-19 pandemic response have already been applied to other outbreaks, such as ebola, polio and cholera. 

Social listening in public health is the process of gathering information about people's questions, concerns, and circulating narratives and misinformation about health from online and offline data sources. Data gleaned from social media platforms are being used in a number ways to identify and understand outbreaks, geographic and demographic trends, networks, sentiment and behavioral responses to public health emergencies. Offline data collection may include rapid surveys, townhalls, or interviews with people in vulnerable groups, communities of focus and specific populations. These data are then integrated with other data sources from the health system (such as health information systems) and outside of it (mobility data) to generate infodemic insights and inform strategies to manage infodemics.

However, the collection and use of this data presents ethical challenges, such as privacy and consent, and there is currently no agreed-upon ethical framework for social listening and infodemic management. 

The panel will focus on issues such as data control, commercialization, transparency, and accountability, and will consider ethical guidelines for both online and offline data collection, analysis and reporting. The goal is to develop an ethical framework for social listening and infodemic management to guide health authorities when planning and standing up infodemic insights teams and activities, as well as for practitioners when planning and implementing social listening and infodemic management."