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Freedom of thought is not directly protected as a right in the United States. Instead, US First Amendment law protects a range of rights that may allow thoughts to be expressed. Freedom of speech has been granted especially robust protection. US courts have extended this protection to a wide range of commercial activities judged to have expressive content. In protecting these rights, US jurisprudence frequently relies on the image of the marketplace of ideas as furthering the search for truth. This commercial image, however, has increasingly detached expressive rights from the understanding of freedom of thought as a critical forum for individual autonomy. Indeed, the commercialisation of US free speech doctrine has drawn criticism for “weaponising” free speech to attack disfavoured economic and regulatory policies and thus potentially affecting freedom of thought adversely. The Internet complicates this picture. This paper argues that the Supreme Court’s expansion of the First Amendment for the benefit of commercial actors lies in the problematic tension with the justification for individual freedom of thought resting in personal self-direction and identity.

Peterson, Karlawish and Largent (2021) offer a defense of supported decision making in health care for people with dynamic and diminishing capacity. They are to be warmly commended for bringing sup...

Purpose Death from suicide has an estimated heritability of ~50%. Research may soon allow calculation of polygenic risk scores (PRS) for suicide death, which could be marketed directly to consumers. This raises ethical concerns. Understanding how consumers will utilize this information is urgent. Methods We conducted three focus groups involving suicide attempt survivors ("survivors") and family members of suicide decedents ("family members") to gauge their reactions to this technology. Questions focused on positive and negative implications of PRS results. Qualitative research methods were used to summarize studio results. Results Eight survivors and 13 family members participated. Both groups postulated benefits of suicide PRS, including prevention and reduced stigma. Their concerns ranged from increased stigma to adverse psychological effects. They suggested that suicide PRS should be accompanied by extensive education and counseling. Participants experienced no adverse effects. Conclusion Many ethical, legal, and social implications of genetic testing for suicide risk are highly salient to community stakeholders. Our participants hoped that suicide PRS could have significant individual and community-level benefits, but had concerns about effects in several domains, including stigma, access to insurance and employment, and increased anxiety and depression.

Coronavirus disease 2019 (COVID-19) continues to impact older adults disproportionately with respect to serious consequences ranging from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these issues have focused attention on how these resources are ultimately allocated and used. Some strategies, for example, misguidedly use age as an arbitrary criterion that disfavors older adults in resource allocation decisions. This is a companion article to the American Geriatrics Society (AGS) position statement, "Resource Allocation Strategies and Age-Related Considerations in the COVID-19 Era and Beyond." It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations that should be considered when developing strategies for allocation of scarce resources during an emergency involving older adults. This review presents the legal and ethical background for the position statement and discusses these issues that informed the development of the AGS positions: (1) age as a determining factor, (2) age as a tiebreaker, (3) criteria with a differential impact on older adults, (4) individual choices and advance directives, (5) racial/ethnic disparities and resource allocation, and (6) scoring systems and their impact on older adults. It also considers the role of advance directives as expressions of individual preferences in pandemics. J Am Geriatr Soc 68:1143-1149, 2020.

Although inadequate immunization is a significant public health problem, as covid-19 is an urgent reminder, it has been largely ignored in amateur youth sports. By comparison, safety issues such as...

Supplemental Digital Content is available in the text., OBJECTIVES: Access to personal health records in an ICU by persons involved in the patient’s care (referred to broadly as “family members” below) has the potential to increase engagement and reduce the negative psychologic sequelae of such hospitalizations. Currently, little is known about patient preferences for information sharing with a designated family member in the ICU. We sought to understand the information-sharing preferences of former ICU patients and their family members and to identify predictors of information-sharing preferences. DESIGN: We performed an internet survey that was developed by a broad, multidisciplinary team of stakeholders. Formal pilot testing of the survey was conducted prior to internet survey administration to study subjects. SETTING: Internet survey. Subjects: Subjects included English-speaking adults who had an ICU experience or a family member with ICU experience between 2013 and 2016. We used panel sampling to ensure an ethnically representative sample of the U.S. population. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: One thousand five hundred twenty surveys were submitted, and 1,470 were included in analysis. The majority of respondents (93.6%) stated that they would want to share present and past medical history, either all or that related to their ICU stay, with a designated family member of their choosing. The majority (79%) would also want their designated family member to be able to access that information from a home computer. Although most respondents preferred to share all types of information, they indicated varying levels of willingness to share specific types of more sensitive information. Information-sharing preferences did not differ by age, sex, ethnicity, or type of prior experience in the ICU (i.e., patient or family member). CONCLUSIONS: In the context of an ICU admission, sharing personal health information with a person of the patient’s choosing appears desirable for most patients and family members. Policies and implementation of regulations should take this into consideration.

When the COVID-19 pandemic reached the United States in spring 2020, many states and hospitals announced crisis standards of care (CSC) plans that used age as a categorical exclusion criterion. Such age-choosing was quickly flagged as discriminatory, and so some states and hospitals shifted to embedding age as a tiebreaker deeper in their plans. Different rationales were given for using age as a tiebreaker: (1) that younger patients were more likely to survive than older patients, (2) that saving younger patients would save more life-years, (3) that younger patients deserved a chance to live through life's stages. We provide a critical analysis of these three rationales, noting the differences between them, and then questioning the ethical and legal justifications for such age-choosing.

In “Medical Ethics: Common or Uncommon Morality,”1 Rosamond Rhodes defends a specialist view of medical ethics, specifically the ethics of physicians. Rhodes’s account is specifically about the ethics of medical professionals, rooted in what these professionals do. It would seem to follow that other healthcare professions might be subject to ethical standards that differ from those applicable to physicians, rooted in what these other professions do, but I leave this point aside for purposes of this commentary. Rhodes’s view includes both a negative and a positive thesis. The negative thesis is that precepts in medical ethics—understood as the ethics of physicians—cannot be derived from principles of common morality. The positive thesis is two-fold: that precepts in medical ethics must be derived from an account of the special nature of what physicians do, and that this account is to be understood through an overlapping consensus of rational and reasonable medical professionals. While I agree emphatically with, and have learned a great deal from, Rhodes’s defense of the negative thesis, I disagree with both claims in Rhodes’s positive thesis, for reasons I will now explain after a brief observation about the negative thesis.

Genome-wide association studies (GWAS) provide valuable information in research contexts regarding genomic changes that contribute to risks for complex psychiatric conditions like major depressive disorder. GWAS results can be used to calculate polygenic risk scores (PRS) for psychiatric conditions, such as bipolar disorder or schizophrenia, as well as for other traits, such as obesity or hypertension. Private companies that provide direct-to-consumer (DTC) genetic testing sometimes report PRS for a variety of traits. Recently, the first well-powered GWAS study for suicide death was published. PRS reports that claim to assess suicide risk are therefore likely to appear soon in the DTC setting. We describe ethical concerns regarding the commercial use of GWAS results related to suicide. We identify several issues that must be addressed before PRS for suicide risk is made available to the public through DTC: (a) the potential for misinterpretation of results, (b) consumers' perceptions about determinism and behavior change, (c) potential contributions to stigma, discrimination, and health disparities; and (d) ethical problems regarding the testing of children and vulnerable adults. Tests for genetic prediction of suicidality may eventually have clinical significance, but until then, the potential for individual and public harm significantly outweighs any potential benefit. Even if genetic prediction of suicidality improves significantly, information about genetic risk scores must be distributed cautiously, with genetic counseling, and with adequate safeguards.

Pandemics invite natural experiments: testing hypotheses through observing the effects of interventions without manipulating exposure to the intervention. With novel infections like COVID-19 that spread rapidly and widely, knowledge gaps may be extensive. Quick action may be necessary and randomized trials impracticable if not downright impossible. But what can justify such interventions ethically, given that they are in some sense widescale experiments upon unaware members of the public who have no opportunity to choose not to participate? And what ethical limits to them should there be?

In the winter and early spring of 2020, COVID-19 stunned the world. Across the globe, public health was slow to respond. Failures of surveillance—of gathering, understanding, and sharing information—drew part of the blame. These lapses were real and could have been anticipated. This volume addresses the ethical, political, and legal issues underlying difficulties in maintaining adequate surveillance for public health. It argues that public trust is essential to sustain surveillance. For trust to be warranted, publics must be assured that information will be used to promote health equitably. Transparency and oversight are needed to protect individuals against harm and groups against discrimination and stigma. Bringing together expertise from bioethics, law, political science, and public policy, the authors of this volume develop a comprehensive approach to sustaining surveillance in today’s changing, diverse, and unjust world.

What is or should be the role of consent in public health? Should the role of consent be different if the public health action involves surveillance rather than efforts to change behavior to improve health? Should either individual or community consent be required for the exercise of surveillance? If community consent is required, what constitutes the community and how might it give consent? This chapter explores these difficult questions about consent and communities. It argues that the ethical considerations of respect for persons that lie behind informed consent can be reflected in the roles of public health, groups, communities, and populations in surveillance. Reflecting such respect, however, requires careful attention to the differing ways communities may be defined, in terms of political borders, geography, groups, identities, and interests. It also requires nuanced understanding of the different ways communities develop, interrelate, and function.

New data are being used and new actors are engaging in surveillance by, for, and about public health. This chapter surveys many of these developments: interoperable electronic health records, retained blood spots from newborn screening, biobanks and other genetic databases. patient registries, information gained in research, direct to consumer testing (including genetic testing), smartphones and smartphone apps, wearables and biosensors, and robots and smart devices. It explores the possibilities for bias introduced by the use of artificial intelligence and questions common assumptions about the permissibility of using deidentified data. It also considers how private sector actors such as social media platforms may further public health but have economic interests orthogonal to or in tension with public health. These developments in data use and analysis carry the potential for great benefit but also significant risks of harm. The chapter concludes that regulation is uneven at best and that increased oversight and transparency are imperative to avoid backlash and sustain trust in these novel forms of data use.

Identifying cases of contagious disease and following any chains of transmission from them is a mainstay of public health efforts to stop disease spread. This method of surveillance is ineffective, however, if people cannot be found or refuse to reveal contacts. It also declines in efficacy as disease spreads widely in a community or is transmitted in ways such as aerolisization that may make it difficult to recognize that contacts have occurred. This chapter considers the ethics of contact tracing, arguing that the method has far too often been associated with moral condemnation of behaviours such as non-marital sex or with stigmatization of groups. The chapter then explores how contact tracing can be combined with treatment and other support to facilitate warranted trust in the use of this traditional surveillance method.

Injustice in surveillance may occur if surveillance is directed towards protecting the health of some but the data are gathered at the expense of others. Failures to surveille may be unjust if they leave people subject to health inequities. Such injustice in surveillance may undermine trust. This chapter explores injustice in surveillance and ethical responses. Primary examples are drawn from surveillance of environmental risks, especially those involving unclean or contaminated water. These injustices occur across the globe, from Flint, Michigan, in the United States to refugee camps in Bangladesh. The chapter also takes up the obligations of others when societies are failing to act justly, arguing for the importance of addressing corrosive disadvantages suffered especially by children but by other disadvantaged populations as well.

During public health crises including the COVID-19 pandemic, resource scarcity and contagion risks may require health systems to shift—to some degree—from a usual clinical ethic, focused on the well-being of individual patients, to a public health ethic, focused on population health. Many triage policies exist that fall under the legal protections afforded by “crisis standards of care,” but they have key differences. We critically appraise one of the most fundamental differences among policies, namely the use of criteria to categorically exclude certain patients from eligibility for otherwise standard medical services. We examine these categorical exclusion criteria from ethical, legal, disability, and implementation perspectives. Focusing our analysis on the most common type of exclusion criteria, which are disease-specific, we conclude that optimal policies for critical care resource allocation and the use of cardiopulmonary resuscitation (CPR) should not use categorical exclusions. We argue that the avoidance of categorical exclusions is often practically feasible, consistent with public health norms, and mitigates discrimination against persons with disabilities.

Coronavirus disease 2019 (COVID-19) continues to impact older adults disproportionately, from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these needs have focused attention on how resources are ultimately allocated and used. Some strategies misguidedly use age as an arbitrary criterion, inappropriately disfavoring older adults. This statement represents the official policy position of the American Geriatrics Society (AGS). It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations to consider when developing strategies for allocating scarce resources during an emergency involving older adults. Members of the AGS Ethics Committee collaborated with interprofessional experts in ethics, law, nursing, and medicine (including geriatrics, palliative care, emergency medicine, and pulmonology/critical care) to conduct a structured literature review and examine relevant reports. The resulting recommendations defend a particular view of distributive justice that maximizes relevant clinical factors and deemphasizes or eliminates factors placing arbitrary, disproportionate weight on advanced age. The AGS positions include (1) avoiding age per se as a means for excluding anyone from care; (2) assessing comorbidities and considering the disparate impact of social determinants of health; (3) encouraging decision makers to focus primarily on potential short-term (not long-term) outcomes; (4) avoiding ancillary criteria such as "life-years saved" and "long-term predicted life expectancy" that might disadvantage older people; (5) forming and staffing triage committees tasked with allocating scarce resources; (6) developing institutional resource allocation strategies that are transparent and applied uniformly; and (7) facilitating appropriate advance care planning. The statement includes recommendations that should be immediately implemented to address resource allocation strategies during COVID-19, aligning with AGS positions. The statement also includes recommendations for post-pandemic review. Such review would support revised strategies to ensure that governments and institutions have equitable emergency resource allocation strategies, avoid future discriminatory language and practice, and have appropriate guidance to develop national frameworks for emergent resource allocation decisions. J Am Geriatr Soc 68:1136-1142, 2020.

In 2013, the U.S. Supreme Court held that naturally occurring human genes are not patentable subject matter. This decision, invalidating patents held by Myriad Genetics involving genes affecting breast cancer, appeared to further the constitutional policy behind intellectual property protection to promote scientific progress and to make genetic testing more readily available to patients. However, the decision's ironic aftermath is continuing assertion by genetic testing companies of trade secrets protections over information about the significance of genetic variants. This article analyzes possible approaches to the assertion of trade secret protections over information about the significance of genetic variants. Specifically, we consider five approaches: voluntary responses from the scientific community; Food and Drug Administration (FDA) or CMS regulation; creation of additional march-in rights as under the Bayh Dole Act; compulsory licensing as under patent law; and creation of a public policy exception to trade secret protection. We explore what each approach would require legally if applied to break trade secret barriers, together with their advantages and disadvantages. While our analysis concerns genetic information, we conclude with some thoughts about its relevance to other types of big data now protected by trade secrets such as information about innovations in quality of care.

Plans such as Alabama's, which explicitly excluded disability-based categories such as severe or profound mental retardation, were challenged by disability rights groups as violating antidiscrimination law and were withdrawn 1 Left unstated in the bulletin issued by the Office for Civil Rights (OCR) at the US Department of Health and Human Services at the time was whether triage could consider individualized assessments of survival prospects beyond the immediate episode of illness 2 A resolution agreement reached between OCR and the state of Tennessee in late June 2020 takes a far-reaching antidiscrimination stance The resolution also may be stronger than the policy statement of the American Geriatrics Association that some degree of benefit to patients may be considered in the form of short-term survival up to six months 5 The resolution agreement applies to Tennessee;how further hospital or state plans may be evaluated by OCR will surely continue to unfold Calling attention to the many aspects of disability discrimination in pandemic times, as Sabatello et al do, reminds us that disability nondiscrimination has implications for social justice that reach far beyond a single group 4jPI-l Leslie P Francis, JD, PhD CONFLICTS OF INTEREST The author has no conflicts of interest to disclose

To keep pace with changing technology and to provide better treatment to the public, U.S. poison control centers have increasingly implemented new ways of communicating with healthcare providers and with patients, including electronic transfer of patient information. Innovation in communication and information sharing raises concerns over patient privacy and compliance with applicable laws. This narrative review analyzes both typical activities and emerging innovations of PCCs in relation to U.S. law and regulation regarding privacy, specifically the Health Insurance Portability and Accountability Act, the Substance Abuse and Mental Health Treatment Act, and the Federal Trade Commission Act. PCCs that are "covered entities" under HIPAA may exchange patient health information with other providers by telephone for purposes of treatment, and certainly during the emergency management of poisonings. SAMHSA regulations, however, limit information that can be shared outside of emergencies without patient consent. The FTC Act prohibits unfair or deceptive trade practices which may in some circumstances involve privacy violations. Text message exchanges between PCCs and patients present particularly difficult privacy challenges under these laws.

Recent theorizing about justice for circumstances of injustice has largely bypassed disability. This chapter explores partial compliance theory through achieving disability civil rights. After sketching the non-ideal and partial compliance theory landscape since Rawls’s development of an ideal liberal theory of justice, the chapter disavows the misleading assumption that disability is non-ideal. Rather, injustice is located in social responses to differences in bodies and minds, as with the social model of disability. Using examples from the Americans with Disabilities Act, employment, and education, the chapter demonstrates how partial compliance theory can negotiate difficult questions about obligations when others behave unjustly and improvements seem infeasible. The chapter then explores disability civil rights without idealizations about justice. It concludes with thoughts about eugenics, why disability has largely been left aside in partial compliance theory, and how understanding disability civil rights can contribute importantly to our understanding of justice in non-ideal circumstances.

Social media are now at the heart of political debate and discourse. Yet these media present challenges of epistemic justice because of the voices they may both amplify and suppress and the influence they wield. Contributions may be difficult to evaluate, especially if the identity of contributors is masked or unknown. Three approaches to these problems have predominated: regulating content, as in Germany; relying on the marketplace of open ideas to identify and criticize problems in contributions, as in the United States; and requiring transparency about the identity of social media users. This contribution sketches the epistemological disadvantages faced by consumers of social media and inquires whether they are different in kind from the disadvantages associated with more traditional media. It then sets out the epistemological difficulties of both content-regulation and the marketplace of ideas. It concludes with a defense of source transparency, tempered by the need to protect the identities of those who may be endangered by disclosure.

One standard menu of approaches to the prevalence of anti-microbial resistance diseases is to enhance surveillance, fund research to develop new antimicrobials, and educate providers and patients to reduce unnecessary antimicrobial use. The primarily utilitarian reasoning behind this menu is unstable, however, if it fails to take fairness into account. This chapter develops an account of the fair uses of information gained in public health surveillance. We begin by sketching information needs and gaps in surveillance. We then demonstrate how analysis of information uses is incomplete if viewed from the perspectives of likely vectors of disease who may be subjects of fear and stigma and likely victims who may be coerced into isolation or quarantine. Next, we consider aspects of fairness in the use of information in non-ideal circumstances: inclusive participation in decisions about information use, resource plans for those needing services, and assurances of reciprocal support. Fairness in information use recognizes the ineluctable twinning of victims and vectors in the face of serious pandemic disease.

This is a response to the letter to the editor "Prioritizing the Prevention of Early Deaths during Covid-19," by Govind Persad.

Families have for decades advocated for full access to intensive care units (ICUs) and meaningful partnership with clinicians, resulting in gradual improvements in family access and collaboration with ICU clinicians. Despite such advances, family members in adult ICUs are still commonly asked to leave the patient's room during invasive bedside procedures, regardless of whether the patient would prefer family to be present. Physicians may be resistant to having family members at the bedside due to concerns about trainee education, medicolegal implications, possible effects on the technical quality of procedures due to distractions, and procedural sterility. Limited evidence from parallel settings does not support these concerns. Family presence during ICU procedures, when the patient and family member both desire it, fulfills the mandates of patient-centered care. We anticipate that such inclusion will increase family engagement, improve patient and family satisfaction, and may, on the basis of studies of open visitation, pediatric ICU experience, and family presence during cardiopulmonary resuscitation, decrease psychological distress in patients and family members. We believe these goals can be achieved without compromising the quality of patient care, increasing provider burden significantly, or increasing risks of litigation. In this article, we weigh current evidence, consider historical objections to family presence at ICU procedures, and report our clinical experience with the practice. An outline for implementing family procedural presence in the ICU is also presented.

Patients in intensive care units (ICUs) may lack decisional capacity and may depend on proxy decision makers (PDMs) to make medical decisions on their behalf. High-quality information-sharing with PDMs, including through such means as health information technology, could improve communication and decision making and could potentially minimize the psychological consequences of an ICU stay for both patients and their family members. However, alongside these anticipated benefits of information-sharing are risks of unwanted disclosure of sensitive information. Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting patient privacy are urgently needed. We identified eight themes that should be considered in balancing health information access and patient privacy: 1) potential benefits to patients from PDM data access; 2) potential harms to patients from such access; 3) the moral status of families within the patient-clinician relationship; 4) the scope of relevant information provided to PDMs; 5) issues around defining PDMs’ authority; 6) methods for eliciting and documenting patient preferences about their family’s information access; 7) the relevance of methods for ascertaining the identity of PDMs; and 8) the obligations of hospitals to prevent privacy breaches by PDMs. We conclude that PDMs should typically have access to health information from the current episode of care when the patient is decisionally impaired, unless the patient has previously expressed a clear preference that PDMs not have such access.