Scientific Integrity And Ethics

Henrietta Lacks: Stolen Cells, Born Today Henrietta Lacks, born on this day in 1920, unknowingly became an immortal figure in modern medicine. Her story, though initially shrouded in secrecy, is now a cornerstone in discussions about bioethics and medical advancements. Lacks’ cells, taken without her consent in 1951, have revolutionized scientific research and continue to impact healthcare today. The story of [Henrietta Lacks] is one of both incredible scientific breakthrough and profound ethical questions. Diagnosed with cervical cancer, Lacks underwent treatment at Johns Hopkins Hospital, where, unbeknownst to her, cells were harvested from her tumor. These cells, unlike others at the time, thrived and multiplied in a lab setting, becoming known as the HeLa cell line. This breakthrough allowed scientists to conduct experiments and research in ways previously impossible, leading to pivotal discoveries. The HeLa cells played an instrumental role in developing the polio vaccine, as well as advancements in cloning, gene mapping, and in vitro fertilization. Their use accelerated scientific progress at an unprecedented rate, contributing significantly to our understanding of diseases and treatments. However, the lack of informed consent and the subsequent commercialization of her cells raised serious ethical concerns. The Lacks family remained unaware of the cell line’s existence for decades, highlighting the systemic issues of racial and economic disparities within the medical system. The legacy of Henrietta Lacks serves as a constant reminder of the importance of ethical considerations in scientific research. It prompts ongoing conversations about patient rights, informed consent, and the need for equitable practices within the medical field. Her story forces us to confront the complexities of scientific advancement and the potential impact on marginalized communities. Even though she passed away too soon, her contribution to science is everlasting.

Our global study on the state of trust in scientists in 68 countries is now out in Nature Human Behaviour! 🥳 Given narratives of a crisis of #trust in scientists, Niels G. Mede and I launched and led the Trust in Science and Science-Related Populism (TISP) Many Labs study to investigate trust in scientists around the world. With a consortium of 241 researchers at 179 institutions, we surveyed 71,922 individuals in 68 countries, providing the largest dataset on trust in scientists post-pandemic: https://lnkd.in/d9WsA5AN Here are some key findings: 💡 Across 68 countries, trust in scientists is moderately high (mean trust = 3.62, on a scale from 1 = very low trust to 5 = very high trust), with strong differences across countries. Our study confirms and strengthens previous work that refutes the narrative of wide-ranging low trust in scientists. 👐 Majorities perceive scientists to be qualified (78%), honest (57%), and concerned about people’s well-being (56%). 🗣️ 83% of respondents believe that scientists should communicate about science with the general public. 📣 49% believe that that scientists should actively advocate for specific policies (23% disagree). 52% believe that scientists should be more involved in the policymaking process (22% disagree). ➡️ Check out the TISP app for country-specific results: https://lnkd.in/dVbYyYhD ➡️ For more information on the TISP Project: https://lnkd.in/dUtZBCfY ____ On a more personal note: Leading the TISP-Consortium has been an incredibly rewarding experience. I’m deeply grateful to everyone who contributed to making the TISP project a success—it was a truly collaborative effort. A special thanks goes to the study co-lead Niels G. Mede, whose dedication and kindness made all the difference.  I also want to express my heartfelt gratitude to the TISP Core Team—our advisory board of nine experts—who played a pivotal role in shaping the project's success, providing guidance on all sorts of matters, and always having an open ear: Sebastian Berger John C. Besley Cameron Brick Marina Joubert Ed Maibach Sabina Mihelj Oreskes Naomi Mike S. Schäfer Sander van der Linden The biggest thanks go out to the many co-authors for their trust (🥁 pun intended), patience, and support. This would not have been possible without all of you. Special thanks go to Oreskes Naomi for hosting me at Harvard University for two years (funded by the Swiss National Science Foundation SNSF). Leading such a big project on short-term postdoc contracts was professionally and personally challenging at times, and I am grateful to the SOCRATES CAS at University of Hanover, Mike S. Schäfer and his team at UZH Department of Communication and Media Research (IKMZ), David N. Bresch and the Weather and Climate Risks Group at ETH Zürich, and the Collegium Helveticum and its fellows, for their support in the final year of the project. 🙏

AI is racing ahead. Public trust isn’t keeping up. New global data from Pew Research Center paints a clear picture: people know about AI, but many are uneasy—and who they trust to regulate it varies widely. What stands out • Awareness is high, but not deep: a third have heard “a lot” about AI, nearly half “a little,” and only a small share nothing at all. Awareness strongly correlates with national income. • Concern outweighs excitement: roughly one in three are more concerned than excited, while only one in six are mostly excited. Older adults and women are more likely to express concern. • Trust to regulate AI is local first: most people trust their own country, followed by the EU, the U.S., and then China. • Generational gap: younger adults are more aware and more optimistic; older adults tend to be more cautious. Heavy internet users are also more positive. Why this matters for healthcare • Adoption hinges on trust. If patients and clinicians are uneasy, even the best AI won’t scale. Regulatory trust favors the EU and domestic systems in many markets, so aligning with clear, transparent guardrails is a strategic advantage—not a checkbox. • Equity risk is real. Lower awareness tracks with lower income and less education. If we don’t invest in AI literacy and explainability, we risk widening digital health disparities right when we promise precision care for all. • Design for the skeptic. Older adults and many women report higher concern. Build workflows and communication that demonstrate safety, reliability, and accountability at the point of care—not just in a white paper. • Localize governance. Health systems that operationalize responsible AI with clear data policies, bias monitoring, and audit trails will win trust faster than those waiting for “global consensus.” My take Trust is now a clinical feature. Organizations that treat governance, transparency, and AI literacy as core product capabilities will move from pilots to impact. Those that don’t will stall in the “concern” zone, no matter how advanced the model. At GE HealthCare, our Responsible AI Principles ensure trust in every solution: Safety, Validity & Reliability, Security & Resiliency, Accountability & Transparency, Explainability & Interpretability, Privacy-Enhanced, and Fairness with Bias Managed. Enjoy the Sunday-Read. Your move How are you measuring and building trust in your AI-enabled care pathways—among clinicians, patients, and regulators? Which single change would boost confidence the most in your organization?

🔬 Towards Decentralized and Privacy-Preserving Clinical Trials 🧠💡Register, learn and build Decentralization in clinical research is not just about scalability or cost-efficiency. It’s a cryptographic transformation that redefines trust and data sovereignty in medical innovation. Technologies like Zero-Knowledge Proofs (ZKPs) and Fully Homomorphic Encryption (FHE) are enabling a new paradigm in decentralized trials: ✅ Privacy without compromising verification: With ZKPs, patients can prove eligibility (inclusion/exclusion criteria) without revealing their full medical history. Compliance is validated without exposing sensitive data. ✅ Computation over encrypted data (FHE): FHE allows researchers to run statistical analyses and predictive models directly on encrypted datasets. No need to decrypt—privacy is preserved even during processing. Ideal for multicenter trials or pharmacogenomic studies. ✅ Traceability without surveillance: Combining blockchain with ZK/FHE enables immutable and auditable recording of clinical events (dosage, adverse effects, outcomes) without identifying the patient. 🌐 In this new model: Data stays where it’s generated (edge computing, patient devices) No centralized data hoarding or exposure risks GDPR and similar regulations are met by design, not workaround 📣 If you're working at the intersection of digital health, cryptography and clinical innovation, this is the future: crypto-technology powering secure, precise, and ethical research. #ZKProofs #FHE #DeSci #DecentralizedTrials #PrivacyByDesign #Web3Health #DigitalTrust #Blockchain #ClinicalResearch #HealthTech Anthony Joaquim José Daniel Dr. Hidenori Vivek Helena Lars Yousuke Carlos Iker Paris João Domingos

Why evidence matters more than headlines: and the danger of snake oil! In the world of neurodevelopmental conditions and traits such as autism and ADHD, one thing is constant: families are searching for answers. That very human drive for explanation and certainty can, unfortunately, make us vulnerable to misinformation, fear-mongering, and snake oil solutions. Two recent and well-known examples illustrate this risk. 🔹 the MMR vaccine and autism In 1998, a small case series suggested a link between the MMR vaccine and autism. Despite only involving 12 children, the story made global headlines. We now know that this research was not only flawed but fraudulent, and it has since been fully retracted. Yet the damage was real: vaccination rates dropped, measles outbreaks occurred, and public trust was eroded. 🔹 Paracetamol use in pregnancy More recently, headlines have suggested that paracetamol (acetaminophen) during pregnancy may increase the risk of autism or ADHD. However, the largest study to date – covering more than 2.4 million children in Sweden – found no increased risk when careful sibling comparisons were made. Earlier “signals” were most likely due to family and environmental factors, not the medication. These cases highlight a bigger problem: Headlines are short, bold, and dramatic; science is careful, slow, and nuanced. false claims spread faster than careful corrections. Once fear takes hold, it can drive people toward unproven interventions, costly treatments, or avoidance of safe healthcare. This is where “snake oil” creeps in. When people are scared, there will always be those ready to exploit that fear with promises of miracle cures, restrictive diets, or expensive “brain training” that lacks evidence. So, what should we do? ✔️ Check the evidence base, not just one study – ask whether findings are replicated, large-scale, and peer-reviewed. ✔️ Be wary of anecdotes over data – individual stories can be powerful but are not proof. ✔️ Look at who benefits – is the claim linked to financial or political gain? ✔️ Communicate carefully – those of us in healthcare, education, or research Have a duty to share science accessibly, honestly, and without sensationalism. For families and professionals alike, the message is clear: don’t let fear be louder than facts. Evidence is our best safeguard against misinformation and exploitation, and it is what truly helps us support autistic and ADHD individuals to thrive.

SEBI Enforcement Spotlight: A Wake-Up Call for Fund Managers SEBI’s recent settlement in the Edelweiss matter is certainly unambiguous: having a written Conflict-of-Interest (CoI) policy is mandatory, but not enough. Regulators such as SEBI want evidence that policies adopted by the AIFs actually operate: i.e., committees must meet, recusals must be documented, disclosures must match trustee reporting, and governance failures must be remedied with real, verifiable action. For AIF Sponsors, Managers and Trustees, this is the time to convert governance rhetoric into repeatable, auditable practice. Quick, actionable takeaways for Funds - Operationalise your CoI policy: Don’t let the policy live in a drawer. In other words, schedule committee meetings, record recusals, and keep minutes that explain decisions and rationale. - Build independent oversight: A Fund Board with independent members and a dedicated Governance/Conflict Committee materially strengthens your compliance posture and investor confidence. - Make CTR & trustee reporting airtight: Ensure trustee submissions are accurate, fully evidenced and senior-signed before filing. Inaccurate reports are a clear regulatory trigger. - Segregate functions: Keep sourcing, voting and investor-relations roles distinct. Require written recusal forms and preserve the audit trail. - Test, review, disclose: Run periodic independent reviews (internal audit or external) and promptly disclose any material policy changes or conflicts to LPs. Fund Managers should treat this order as both a warning and a practical instruction manual: don’t let CoI policies sit in a file. Instead, embed them into everyday operations. Run regular committee meetings, require documented recusals, tighten trustee reporting, and schedule independent tests of your controls. These simple, consistent actions prevent conflicts from turning into crises, safeguard investor capital and protect your fund’s reputation, while showing LPs and regulators that every decision is made fairly, transparently, and in the best interests of unitholders. Ultimately, effective conflict management is an investor safeguard. It ensures decisions uphold fiduciary integrity, protects trust, and reinforces the credibility of India’s AIF ecosystem. ANB Legal I Akshat Tripathi #SEBI #AIF #FundManagement

I was surprised by that: Since the onset of the COVID-19 pandemic, trust in science has steadily declined. The fraction of US adults that have little to no confidence in scientists to act in the public’s interests has roughly doubled, from 12% in April 20 to 27% in October 2023. These findings of the Pew Research Center have recently been confirmed in Germany, where much of Bayer’s research activity originates. The Science Barometer 2023 by the German "Science in Dialogue" initiative shows that the fraction of Germans who somewhat or completely distrust science has likewise roughly doubled from 6% in April 2020 to 13% in August 2023. Despite the stark difference in absolute levels, the dynamics are remarkably similar. I firmly believe that sound scientific knowledge is crucial for tackling future global challenges. We must therefore monitor and counteract these developments.  For science to be trusted, it must improve people's lives. Public investment in research is more important than ever. Equally important is prudent regulation that does not hinder companies’ R&D departments from delivering persuasive products, e.g., by cutting unnecessary red tape. According to the German Science Barometer, the main reason behind the distrust however is related to the financing of research. And indeed, the history of industry efforts to manipulate scientific findings is well documented. Bayer is committed to continuously addressing this issue. That is why we are expanding the Bayer Science Collaboration Explorer to the U.S., after last year’s launch in Germany. The database invites everyone to discover our research collaborations with public research institutions and individuals. Both studies also emphasize the fundamental role of education. Improving the quality of our educational institutions is essential to ensure trust in science in the long term. With our educational portfolio, we want to contribute to this safeguard. Bayer's school laboratory program Baylab is a good example of this. The 5th of May 2023 marked the end of the three years and ninety-six days in which the COVID-19 pandemic was formally declared as a ‘public health emergency of international concern’ by the WHO. But the damage to trust has stayed. It is now time to rebuild trust through clear communication – and to admit mistakes that were made when reliable knowledge was still scarce. I would like to invite everyone to think about ways in which we can get back to a basis of mutually accepted facts. Let's make use of the naturally persuasive power of the scientific method. Explore more findings from the Pew Research Center’s survey (https://lnkd.in/ebCtuXqD) and the German Science Barometer 2023 (https://lnkd.in/e-nYtawr; currently in German only).

Hiding or removing scientific data doesn’t protect the public—it puts lives at risk. Transparency in public health and scientific research is fundamental to trust, safety, and effective policymaking. Yet, we are now witnessing deliberate decisions to remove critical scientific data and public health information from our nation’s most trusted institutions, including the CDC, FDA, and NIH. These actions are not just concerning—they undermine public health, erode confidence in our medical institutions, and leave communities vulnerable. Access to accurate, evidence-based information is essential for healthcare professionals, policymakers, and the public to make informed decisions. Suppressing or erasing this data does not protect us; it weakens our ability to respond to crises, from pandemics to chronic disease management. Science must inform policy—not be silenced for political convenience. We cannot afford to let misinformation or suppression dictate our nation’s health policies. I urge my colleagues, scientists, healthcare professionals, and advocates to speak up. Demand transparency. Hold leaders accountable. Support organizations that fight for evidence-based policies. We must ensure that decisions impacting public health are rooted in facts, not politics. Our future depends on it. #ScienceMatters #TransparencyInScience #PublicHealth #TrustTheData #ScienceNotSilence #EvidenceBasedPolicy #Advocacy

Family physicians know the truth: vaccines work. We’ve seen firsthand how they save lives, protect communities and keep families healthy. But if the public loses confidence in science, those protections weaken. We, as a country, cannot afford to let politics chip away at these foundations of public health. The testimony provided by career CDC employees at the HELP Committee hearing was deeply concerning. It is clear that trust in science and our public health infrastructure is eroding at an alarming pace. Public health systems that families rely on are being disrupted, and institutions once seen as trusted are being unduly influenced by political bias versus scientific facts and evidence. That should alarm every one of us.   We need honesty and accountability from our health care leaders. Our public health system and vaccine policy must be grounded in science and evidence, transparent, pursued with a universal commitment to facts, not politics. Anything less risks the health of the people we serve.   Family physicians are proud to stand on the front lines of prevention. They are highly trusted by their patients and the communities they serve. They do this hard work every single day, and see what’s possible when science leads the way. To continue to make this a reality, we must restore public trust and insist that science—not ideology—guides our path forward. That is the only way to a healthier, stronger future for our patients and our communities.

Physician Conflicts of Interest In the U.S., our approach to managing potential physician conflicts is largely centered around ownership. Some of the rules are outright prohibitions... physicians can't own hospitals. Some laws, like Stark, place limits on physicians referring patients to practices/facilities in which they have ownership interests. As a matter of principle, do we need a mechanism to help protect patients from physician self-dealing... those who might consciously or unconsciously put their financial interests above a patient's? I think there's a strong argument for it. Even though 999 physicians will always do what's best for their patients, there's a reasonable possibility that 1 will behave in their own interests (and not the patient's). So, what's the problem with our current system that's based largely on physician ownership? It completely ignores the potential conflicted relationship between large health systems/ health insurance carriers as employers and their employed doctors. Let us not forget that approximately 70% of doctors are now employees. United Health alone employs ~90,000 doctors. Employed doctors are subject to powerful sticks and carrots, including metrics and financial bonuses, that encourage employed doctors to steer patients to services offered by their employers. Is this always what's in the best interest of patients? Many employed doctors will tell you it's not. But it's all perfectly legal because the referring physician isn't an owner in any of it. It's also a major potential conflict of interest. So, what do we do about it? Here's one idea... remove the prohibitions related to ownership and switch to a disclosure model... wherever there's a potential conflict of interest, the patient must be clearly informed of it (and possibly acknowledge it in writing). This would cover both situations where a physician owns something and where an employed physician is being directed and paid to make 'in system' referrals. This is how we manage conflicts in most other industries, particularly banking and investing. Let's put the power of knowledge in the hands of patients and let them decide. More importantly, let's stop giving large hospital system and insurance carrier employers a free pass.