Susan Wolf

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other.

In Freedom Within Reason, Susan Wolf charts a course between incompatibilism, or the notion that freedom and responsibility require causal and metaphysical independence from the impersonal forces of nature, and compatibilism, or the notion that people are free and responsible as long as their actions are governed by their desires. Wolf argues that some of the forces which are beyond our control are friends to freedom rather than enemies of it, enabling us to see the world for what it is. The freedom we want is not independence from the world, but independence from the forces that prevent us from choosing how to live in the light of a sufficient appreciation of the world.

Introduction New, highly portable MRI (pMRI) technology promises to revolutionize brain research by facilitating field-based studies that can expand research to new settings beyond the traditional MRI suite in a medical center. At this early stage of development, understanding public knowledge and attitudes about pMRI research is crucial. Objective In this article we present the first empirical study of the general public’s willingness to participate in pMRI research, and their perceptions of expected benefits and concerns. Methods & Results We conducted a nationally representative online survey (N = 2,001) administered Aug. 15-31, 2022. We found that respondents were overwhelmingly willing to participate in pMRI research, with no significant differences between five key demographic sub-groups: rural residents, older adults (65+), Hispanics, non-Hispanic Blacks, and those economically disadvantaged. Respondents saw many potential benefits (e.g., follow-up information about the study’s results) and few concerns (e.g., insufficient payment) associated with participating. Conclusion Such high public interest in participating confirms the importance of developing ethical guidance for pMRI research now, before that research rapidly expands. The results speak to the importance of minimizing the therapeutic misconception in pMRI research, as the survey reveals gaps in participant knowledge about the capabilities and limitations of pMRI devices to provide clinically informative scans. Our data showed that a lack of trust in scientists can reduce likelihood of participation, and thus researchers will need to engage participant communities to fully realize the potential of pMRI research to reach remote and historically underrepresented populations.

The emergence of innovative neuroimaging technologies, particularly highly portable magnetic resonance imaging (pMRI), has the potential to spawn a transformative era in neuroscience research. Resourced academic institutional review boards (IRBs) with experience overseeing traditional MRI have a special role to play in ethical governance of pMRI research and should facilitate the collaborative development of nuanced and culturally sensitive guidelines and educational resources for pMRI protocols. This paper explores the ethical challenges of pMRI in neuroscience research and the dynamic leadership role that IRBs should play to promote ethical oversight of emerging pMRI research.

Portable MRI for neuroimaging research in remote field settings can reach populations previously excluded from research, including communities underrepresented in current brain neuroscience databases and marginalized in health care. However, research conducted far from a medical institution and potentially in populations facing barriers to health care access raises the question of how to manage incidental findings (IFs) that may warrant clinical workup. Researchers should not withhold information about IFs from historically excluded and underserved population when members consent to receive it, and instead should facilitate access to information and a pathway to clinical care.

Highly portable and accessible MRI technology will allow researchers to conduct field-based MRI research in community settings. Previous guidance for researchers working with fixed MRI does not address the novel ethical, legal, and societal issues (ELSI) of portable MRI (pMRI). Our interdisciplinary Working Group (WG) previously identified 15 core ELSI challenges associated with pMRI research and recommended solutions. In this article, we distill those detailed recommendations into a Portable MRI Research ELSI Checklist that offers practical operational guidance for researchers contemplating using this technology.

In the evolving field of advanced biopreservation technologies, the development of suspended animation (SA) is inspired by real-world challenges. In the context of space exploration, SA is seen as a solution to enable humans to undertake missions far beyond low Earth orbit, including routine travel to other planets in our solar system and beyond. While work on the socio-ethical and legal implications (ELSI) of space exploration continues to evolve, NASA has committed to make ethics a priority issue, making this a fruitful field for further examination.

Research on advanced biopreservation — technologies that include, for example, partial freezing, supercooling, and vitrification with nanoparticle infusion and laser rewarming — is proceeding at a rapid pace, potentially affecting many areas of medicine and the life sciences, food, agriculture, and environmental conservation. Given the breadth and depth of its medical, scientific, and corresponding social impacts, advanced biopreservation is poised to emerge as a disruptive technology with real benefits, but also ethical challenges and risks. Early engagement with potentially affected groups can help navigate possible societal barriers to adoption of this new technology and help ensure that emerging capabilities align with the needs, desires, and expectations of a broad range of interested parties.

This paper advances a new paradigm in clinical ethics education that not only emphasizes development of individual cli but also focuses on the institutional context within which health care professionals work. This approach has been applied to the goal of improving the care provided to critically and terminally ill adults. The model has been adopted by about thirty hospitals and nursing homes; additional institutions will soon join the program, entitled Decisions Near the End of Life. Here, we describe the history and rationale for this approach, its goals, pedagogical assumptions, and design.

Health care is transitioning from genetics to genomics, in which single-gene testing for diagnosis is being replaced by multi-gene panels, genome-wide sequencing, and other multi-genic tests for disease diagnosis, prediction, prognosis, and treatment. This health care transition is spurring a new set of increased or novel liability risks for health care providers and test laboratories. This article describes this transition in both medical care and liability, and addresses 11 areas of potential increased or novel liability risk, offering recommendations to both health care and legal actors to address and manage those liability risks.

The emergence of nanotechnology, and specifically nanobiotechnology, raises major oversight challenges. In the United States, government, industry, and researchers are debating what oversight approaches are most appropriate. Among the federal agencies already embroiled in discussion of oversight approaches are the Food and Drug Administration , Environmental Protection Agency , Department of Agriculture , Occupational Safety and Health Administration , and National Institutes of Health . All can learn from assessment of the successes and failures of past oversight efforts aimed at emerging technologies. This article reports on work funded by the National Science Foundation aimed at learning the lessons of past oversight efforts. The article offers insights that emerge from comparing five oversight case studies that examine oversight of genetically engineered organisms in the food supply, pharmaceuticals, medical devices, chemicals in the workplace, and gene therapy. Using quantitative and qualitative analysis, the authors present a new way of evaluating oversight