Capacity and Medical Decision-Making in First- and Third-Person Perspectives

by James Toomey

Imagine that you were to develop dementia and someone else had to make medical decisions on your behalf. How would you want them to decide? Then suppose that you had to make medical decisions on behalf of another person with dementia. Would you think about decision-making in the same way? A new study in AJOB Empirical Bioethics by myself, Jonathan Lewis, Ivar Hannikainen, and Brian Earp suggests that people may favor different decisions when deciding for others versus when deciding what they would want for themselves.

In the study, we presented a cohort of nearly 1,500 U.S. participants with a vignette based on one of the most persistent and difficult questions in bioethics. The vignette describes someone with ordinary, lifelong cognitive functioning considering the possibility that in the future they might develop dementia and need to make a significant medical decision. But many years later, after they have undergone cognitive decline sufficient to lose legal capacity, the very circumstances they had contemplated occur and they make the opposite decision.

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Q&A: Alex Zhavoronkov on Cognitive Enhancement, Anti-Aging, and AI Drug Development

Interviewed by William Leonard Pickard

Alex Zhavoronkov, PhD, is Founder and CEO of Insilico Medicine, a leading clinical stage biotechnology company developing next-generation artificial intelligence and robotics platforms for drug discovery, with headquarters in Cambridge, MA and facilities around the world. He has invented critical technologies for the creation of novel molecular structures, and pioneered the prediction of human biological aging.

Q: Tell us about Insilico’s work

AZ: Insilico has two main focus areas: developing software and discovering and developing novel drugs for aging-related diseases (thus enhancement in neurodegenerative states and in healthy adults). When it comes to software, most of our platforms are commercially available for startups and academics with free trial access, and for some specific projects we can provide software for free in the form of a collaboration. When it comes to drug discovery, academics and startups can contact us to test our drugs in a variety of experimental models.

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Q&A: George Church on Genomics of Cognitive Enhancement

Interviewed by William Leonard Pickard

George Church, PhD, is the Robert Winthrop Professor of Genetics at Harvard Medical School, Professor of Health Sciences and Technology at Harvard University and the Massachusetts Institute of Technology. He is a founding member of the Wyss Institute for Biologically Inspired Engineering at Harvard.

His research efforts include the first direct genome sequencing method, collaborating in initiating the Human Genome Project, and creating the Personal Genome Project. He co-founded over 50 biotechnology companies as spin-offs from the Church Lab, including Veritas Genetics, Rejuvenate Bio, and Nebula Genomics. Church began Colossal Biosciences to de-extinct the woolly mammoth.

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New Portable MRI Revolutionizing Brain Research Demands Ethical and Legal Innovation

by Francis X. Shen, Susan M. Wolf, and Frances Lawrenz

The advent of highly portable MRI will transform brain research, but urgently requires ethical and legal guidance.

Rather than participants traveling to the MRI scanner, now the scanner can travel to them. This advance could enable research with remote and marginalized communities that have not previously been able to participate, and in doing so address the lack of representativeness and diversity in human neuroscience research.

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3D Rendering Crispr DNA Editing.

Responding to the Comeback of He Jiankui, ‘The CRISPR Baby Scientist’: Lessons from Criminal Justice Theory

By Matthew Chun

He Jiankui — a high-profile Chinese scientist convicted for conducting unethical gene-editing experiments — has been released from prison and is currently fundraising for his new gene therapy endeavor. As the scientific community grapples with how to respond, theories of criminal justice can provide important perspectives to better inform the conversation surrounding Dr. He’s return to research.

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Phone with social media icons - instagram, facebook, and twitter.

A Human Rights Approach to Personal Information Technology

By Adrian Gropper

As we inexorably digitize everyday life, for-profit “Big Tech” cannot be trusted to serve the individual or society.

Personal information must not be locked-in to a commercial tech “platform,” such as Facebook or a branded for-profit entity.

Personal information infrastructure must be treated the same way we treat infrastructure for clean water — as a fundamental human right. Two decades of privatized corporate control over personal information technology in the form of social networks and targeted advertising is evidence that market-based information services for social interaction and free speech can no longer be treated as a discretionary. Private interests are certainly welcome, but the foundational distribution system must be seen as a “commons” accessible to all for the good of all.

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Vaccines.

Promote Trust, Avoid Fraud: Lessons in Public Health Messaging from the Booster Roll Out

By Carmel Shachar

Even in September 2021, it was fairly clear that boosters for all adults, regardless of risk factors or which vaccines they initially received, would be coming soon.

Indeed, within two months, the U.S. Centers for Disease Control and Prevention (CDC) revised its recommendations to say that all vaccinated adults should receive a COVID-19 booster.

Unfortunately, the discrepancy between past messaging, which restricted access to boosters to select groups, and the current, broad recommendation has spawned two, related public health communications problems.

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Close up view of graduation hat on dollar banknotes. Tuition fees concept.

Becoming a Bioethicist is Expensive. That’s a Problem.

By Leah Pierson

The financial barriers associated with becoming a bioethicist make the field less accessible, undermining the quality and relevance of bioethics research.

Because the boundaries of the field are poorly defined, credentials often serve as a gatekeeping mechanism. For instance, the recent creation of the Healthcare Ethics Consultant-Certified (HEC-C) program, which “identifies and assesses a national standard for the professional practice of clinical healthcare ethics consulting” is a good idea in theory. But the cost of the exam starts at $495. There is no fee assistance. Given that 99 percent of those who have taken the exam have passed, the exam seems to largely serve as a financial barrier to becoming an ethics consultant.

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Picture of Ivermectin tablets.

Legal and Ethical Analysis of Court-Ordered Ivermectin Treatment for COVID-19

By Jennifer S. Bard

A judge in Ohio ruled on Monday that a hospital in the region must administer ivermectin to a patient very sick with COVID-19 in their ICU, despite the decision by the medical staff, in agreement with recent statements by the U.S. Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC), that ivermectin is not an appropriate treatment, as it has been shown not to work against COVID.

The patient’s prescription came from a doctor who has no authority to treat patients at this particular hospital, although he is licensed to prescribe medicine in Ohio.

This case tracks a swelling interest, which some ascribe to the efforts of a group called America’s Front Line Doctors, among people for the anti-parasitic medication as both a treatment and prophylactic for COVID-19 — despite warnings from the medical establishment that it doesn’t work, and, if taken in the form normally given to farm animals or at the dosages being suggested, can be harmful.

The Ohio ruling is just the latest of several successful law suits (see similar cases in New York and Illinois) to order hospitals to administer ivermectin to hospitalized COVID-19 patients, despite the objections of the treating physicians.

There is also evidence of a global trend, as evidenced by the order of a court in South Africa to allow the prescription of ivermectin for COVID-19, something that was previously not permitted by the country’s drug regulatory agency.

This trend of courts ordering that treatments requested by hospitalized patients be made available by that hospital — so long as they are prescribed by a physician — opens the door to substantial administrative, legal, and ethical chaos. This post analyzes some of the most pressing legal, regulatory, and ethical concerns.

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