John G. Francis

Rights Variation within a Federalist System: Understanding the Importance of Mobility

Cosmopolitanism at the international level—the recognition of an international human rights regime—has been much defended of late. Little attention has been paid, however, to the federalist analogue: should there be insistence on a national rights regime? Or should variation in the recognition of rights be tolerated at the subnational level, as a necessary concession to moral disagreement, as an effort to contain problematic experiments, or as a way to generate progress about rights? This article argues that subnational variation in the recognition of rights represents a second-best solution to the problem of deep moral disagreement about rights. However, federalism provides a second-best solution only on the condition that citizens are able to move from one subnational jurisdiction to another. To the extent that citizens are able to move to rights regimes that are more favorable to them, intranational variation in the recognition of rights may have advantages over international variation, where national borders may pose barriers to migration. However, in the United States, despite the privileges and immunities of national citizenship, there remain impressive legal barriers to such mobility in the case of contested rights. Given these barriers, federalism as it exists in the United States today does not fully realize the advantages of a second-best solution to deep moral disagreements about rights.

Group compromise: Perfect cases make problematic generalizations

Rothstein (2010) argues that groups may be harmed by research on deidentified data. He concludes that researchers are obligated to minimize group harms and demonstrate respect for a studied group through robust opt-out capacities, information about the possibility of group-based harms, and publications referencing the group that reflect “extraordinary caution and precision.” Like other commentators, Rothstein uses as a touchstone example for group harm the research at Arizona State University involving the Havasupai. The Havasupai contended that research originally intended for diabetes, a significant health problem for them, was extended without permission to mental illness and migratory patterns—the latter challenging critical cultural traditions. The tribe’s lawsuit was recently settled on published terms that included payment of

REFLECTIONS ON GENERATIONAL ANALYSIS: IS THERE A SHARED POLITICAL PERSPECTIVE BETWEEN MEN AND WOMEN?

700,000 to 41 individual plaintiffs, benefits for the tribe such as telemedicine, and scholarships for tribal members to several Arizona universities (Capriccioso 2010). Yet the Havasupai are an unusual example for analyzing group harms. Research using health information from members of such a group has the recognizable potential to affect both the group and its individual members. With a group as identifiable as the Havasupai, risks may be relatively clear before research is undertaken and there may be recognized structures for seeking consultation with group members. Most publicized was the possible discovery of the inaccuracy of the group’s tradition of origin in the Grand Canyon—a discovery challenging both long-held cultural traditions and the role of these traditions in attracting tourists or establishing claims to the land (Pritzer 2000). But there are other possibilities for compromise in research with such a small group. Consider the risk of discovery that a percentage of the group’s members do not have the familial relationships they believe they have; discovery of a percentage of cases of nonpaternity, for example, might have deleterious consequences ranging from others stigmatizing the group as promiscuous to efforts within the group to identify those whose membership is suspect. Or consider the discovery of patterns of illness among members of the group that might have partial genetic explanations or explanations citing common practices (diet?) or common experiences (toxic exposures?). With a comparably small group, such discoveries might lead group members to fear for their own health or others to view them as health risks to themselves or others. These risks do not require individ-

Criminalizing Health-Related Behaviors Dangerous to Others? Disease Transmission, Transmission-Facilitation, and the Importance of Trust

Diachronic investigation of partisan choice and issue orientation by generational analysis is a popular method of contemporary political research. There is as well increased interest in the role played by women in politics. Yet studies of European politics have rarely explored the utility of analysis which assumes shared generational political perspectives in explaining differences in the political behaviour and orientations of men and women. This paper evaluates generational analysis as an explanation of differences in the issue orientations of British men and women during the 1970 electoral campaign.

Justice and Research on Controlled Substances With HIV+ Persons.

Statutes criminalizing behavior that risks transmission of HIV/AIDS exemplify use of the criminal law against individuals who are victims of infectious disease. These statutes, despite their frequency, are misguided in terms of the goals of the criminal law and the public health aim of reducing overall burdens of disease, for at least three important reasons. First, they identify individual offenders for punishment, a paradigm that is misplaced in the most typical contexts of transmission of infectious disease and even for HIV/AIDS, despite claims of AIDS exceptionalism. Second, although there are examples of individuals who transmit infectious disease in a manner that fits the criminal law paradigm of identification of individual offenders for deterrence or retribution, these examples are limited and can be accommodated by existing criminal laws not devoted specifically to infectious disease. Third, and most importantly, the current criminal laws regarding HIV/AIDS, like many other criminal laws applied to infectious disease transmission, have been misguided in focusing on punishment of the diseased individual as a wrongful transmitter. Instead of individual offenders, activities that enhance the scale of disease transmission—behaviors that might be characterized as ‘transmission facilitation’—are a more appropriate target for the criminal law. Examples are trafficking in human beings (including sex trafficking, organ trafficking, and labor trafficking), suppression of information about the emergence of infection in circumstances in which there is a legally established obligation to disclose, and intentional or reckless activities to discourage disease treatment or prevention. Difficulties remain with justifications for criminalizing even these behaviors, however, most importantly the need for trust in reducing overall burdens of disease, problems in identifying individual responsible offenders, and potential misalignment between static criminal law and the changing nature of infectious disease.

HIV treatment as prevention: not an argument for continuing criminalisation of HIV transmission

Building the case for research improving pain management in HIV patients is an urgent matter. Interventional research with controlled substances may need to be complemented with other research strategies, given existing legal risks and barriers. These complementary strategies — along with the research discussed by Andreae and colleagues — require attention to the additional barriers we have explored in this comment. Ethical questions about this research must not be framed primarily as a binary choice between liberty and the need to solve a critical social problem. Considerations of justice must be at the fore, most notably risks to participants such as individuals newly infected with HIV who are among the most vulnerable of populations in the United States, in Europe, and elsewhere. Addressing these considerations of justice requires longer term strategies such a research on pain control in less vulnerable populations, noninterventional research, or other research methodologies that although not gold standard may still produce findings of value. Even partial or imperfect results may help build the case for reforming public policies that govern experimentation with controlled substances. There is value in the adoption of a risk‐averse approach to research on controlled substances with HIV‐infected patients so that these doubly vulnerable patients are not placed in legal harms way.

Review Essay: "Modern Times" and the Welfare State:

HIV prevention and treatment are undergoing impressive technological and practice changes. In-home rapid testing, prophylaxis before risky sex, and treatment as prevention give cause for remarkable optimism and suggest the possibility of an AIDS-free generation. These changes in HIV prevention and treatment might affect HIV policy in several different directions. One direction would be further entrenchment of the currently prevailing punitive approach. A different direction would be a shift away from use of the criminal law as a method for discouraging risky behaviour and towards a strategy aimed to encourage the use of the new treatment and prevention possibilities. When such abrupt technological changes are accompanied by sharp changes in regulatory regimes, they are identified in the public policy literature as a ‘punctuated equilibrium’. A shift away from criminalisation in HIV policy, if sufficiently widespread and transformative, could reach the level of a punctuated equilibrium. This paper presents a critical assessment of the implications of the changes in available forms of treatment and prevention for the continued appeal of criminalisation as an approach to HIV policy. We conclude that criminalisation is less justifiable in the light of what might be circumstances ripe for a punctuated equilibrium.

Privacy, Employment, and Dignity

measurably to improve the lives of the people they were designed to help. Public support for social welfare programs in America seems to contrast sharply with European attitudes which have been supportive of welfare state programs for several generations. In the past and unfortunately sometimes even now, American opinion of the welfare state scholarly and otherwise has been formed by reports of the British experience with occasional reference to either the moral decay or social achievement of the Swedes. The Future That Doesn’t Work is very much of the tradition which takes Britain as an instructive model for the United States. Wilensky’s study, on the other hand, is particularly useful for it offers a systematic comparative analysis of welfare expenditure patterns for both eastern and western nations in terms of social security as a percent of GNP at factor cost. Social security is defined to include funds spent on (1) curative or preventive medical care; (2) income main-

Data reuse and the problem of group identity

Understanding the intangible harms of privacy violations has proved daunting. Yet it is vitally important to understanding the value of privacy beyond economic harms of privacy loss. This chapter explores how violations of employee privacy affect the dignity of work as a lens for understanding intangible privacy harms. Employee privacy has drawn less attention in recent privacy discussions than informational privacy, even though it is seriously under protected in the U.S. today. Indeed, privacy has largely been linked to employment through the possibility that the information individuals reveal on social media may unwittingly affect their employment prospects and thus cause economic harm. Yet arguments for employee privacy—of information, space, and private lives—also draw on dignity in the sense of protection from vulnerability from loss of important human goods such as the ability to function as a citizen and the need for meaningful work. In this chapter, we explore these dignity-based justifications for employee privacy. We then use this discussion to illuminate when non-consensual uses of information drawn from individuals are particularly troubling with respect to the non-economic harms they may cause.

Who Else Should Vote in Local Decision-Making? Enfranchising Part Time Residents and Non-citizens

Abstract Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or practice involves information that has been stripped of individual identifiers but some does not. In some cases, there may have been consent to the reuse but in other cases consent may be absent and people may be entirely unaware of how the data about them are being used. Data sets are also being combined and may contain information with very different sources, consent histories, and individual identifiers. Much of the ethical and policy discussion about the permissibility of data reuse has centered on two questions: for identifiable data, the scope of the original consent and whether the reuse is permissible in light of that scope, and for de-identified data, whether there are unacceptable risks that the data will be reidentified in a manner that is harmful to any data subjects. Prioritizing these questions rests on a picture of the ethics of data use as primarily about respecting the choices of the data subject. We contend that this picture is mistaken; data repurposing, especially when data sets are combined, raises novel questions about the impacts of research on groups and their implications for individuals regarded as falling within these groups. These impacts suggest that the controversies about de-identification or reconsent for reuse are to some extent beside the point. Serious ethical questions are also raised by the inferences that may be drawn about individuals from the research and resulting risks of stigmatization. These risks may arise even when individuals were not part of the original data set being repurposed. Data reuse, repurposing, and recombination may have damaging effects on others not included within the original data sets. These issues of justice for individuals who might be regarded as indirect subjects of research are not even raised by approaches that consider only the implications for or agreement of the original data subject. This chapter argues that health information should be available for reuse, information should be available for use, but in a way that does not yield unexpected surprises, produce direct harm to individuals, or violate warranted trust.