Afterword: Voices and Violence--A Dialogue

WE: When organizing this Symposium on the topic of Law, Literature,and Social Change, we asked whether current trends in literature and in literary, social, and legal theory actually could play a role in bringing about social change. The authors gathered at this Symposium responded to this question in very different ways. As we read their articles and comments, however, and as we talked about their various approaches, some common themes began to emerge. Narrative seemed important. The way people split public life off from private experience came up frequently. But violence seemed to be on everyone\u27s mind. IT: Why violence? SHE: It\u27s in our world. Randy DeShaney, who figures prominently in Martha Minow\u27s contribution to this Symposium, beat his three-year-old son Joshua almost to death. HE: It\u27s in ourselves. Who we are depends on what we exclude. SHE: A father nearly killed his child and that sort of violence is anything but rare. Millions of women, children, and the elderly are beaten or neglected or sexually abused in this country every year. Violence characterizes the relations of one person with another in less overt ways, too. In the areas where I spend much of my time, it occurs when a physician uses the threat of law to coerce a patient\u27s compliance or when a doctor is condescending toward a patient or tries to convince her to act against her wishes. It occurs when a professor humiliates a student. It occurs when a student thinks that the poor are inherently more likely to cheat the government and are less entitled to the security of their homes

Sociotechnical Safeguards for Genomic Data Privacy

Recent developments in a variety of sectors, including health care, research and the direct-to-consumer industry, have led to a dramatic increase in the amount of genomic data that are collected, used and shared. This state of affairs raises new and challenging concerns for personal privacy, both legally and technically. This Review appraises existing and emerging threats to genomic data privacy and discusses how well current legal frameworks and technical safeguards mitigate these concerns. It concludes with a discussion of remaining and emerging challenges and illustrates possible solutions that can balance protecting privacy and realizing the benefits that result from the sharing of genetic information

The Reckoning: The Return of Genomic Results to 1444 Participants Across the eMERGE3 Network

The goal of Electronic Medical Records and Genomics (eMERGE) Phase III Network was to return actionable sequence variants to 25,084 consenting participants from 10 different health care institutions across the United States. The purpose of this study was to evaluate system-based issues relating to the return of results (RoR) disclosure process for clinical grade research genomic tests to eMERGE3 participants

A Game Theoretic Approach to Balance Privacy Risks and Familial Benefits

As recreational genomics continues to grow in its popularity, many people are afforded the opportunity to share their genomes in exchange for various services, including third-party interpretation (TPI) tools, to understand their predisposition to health problems and, based on genome similarity, to find extended family members. At the same time, these services have increasingly been reused by law enforcement to track down potential criminals through family members who disclose their genomic information. While it has been observed that many potential users shy away from such data sharing when they learn that their privacy cannot be assured, it remains unclear how potential users’ valuations of the service will affect a population’s behavior. In this paper, we present a game theoretic framework to model interdependent privacy challenges in genomic data sharing online. Through simulations, we find that in addition to the boundary cases when (1) no player and (2) every player joins, there exist pure-strategy Nash equilibria when a relatively small portion of players choose to join the genomic database. The result is consistent under different parametric settings. We further examine the stability of Nash equilibria and illustrate that the only equilibrium that is resistant to a random dropping of players is when all players join the genomic database. Finally, we show that when players consider the impact that their data sharing may have on their relatives, the only pure strategy Nash equilibria are when either no player or every player shares their genomic data

Privacy in the Genomic Era

Genome sequencing technology has advanced at a rapid pace and it is now possible to generate highly-detailed genotypes inexpensively. The collection and analysis of such data has the potential to support various applications, including personalized medical services. While the benefits of the genomics revolution are trumpeted by the biomedical community, the increased availability of such data has major implications for personal privacy; notably because the genome has certain essential features, which include (but are not limited to) (i) an association with traits and certain diseases, (ii) identification capability (e.g., forensics), and (iii) revelation of family relationships. Moreover, direct-to-consumer DNA testing increases the likelihood that genome data will be made available in less regulated environments, such as the Internet and for-profit companies. The problem of genome data privacy thus resides at the crossroads of computer science, medicine, and public policy. While the computer scientists have addressed data privacy for various data types, there has been less attention dedicated to genomic data. Thus, the goal of this paper is to provide a systematization of knowledge for the computer science community. In doing so, we address some of the (sometimes erroneous) beliefs of this field and we report on a survey we conducted about genome data privacy with biomedical specialists. Then, after characterizing the genome privacy problem, we review the state-of-the-art regarding privacy attacks on genomic data and strategies for mitigating such attacks, as well as contextualizing these attacks from the perspective of medicine and public policy. This paper concludes with an enumeration of the challenges for genome data privacy and presents a framework to systematize the analysis of threats and the design of countermeasures as the field moves forward

Is It Time for a Universal Genetic Forensic Database?

The ethical objections to mandating forensic profiling of newborns and/or compelling every citizen or visitor to submit to a buccal swab or to spit in a cup when they have done nothing wrong are not trivial. But newborns are already subject to compulsory medical screening, and people coming from foreign countries to the United States already submit to fingerprinting. It is also worth noting that concerns about coercion or invasions of privacy did not give pause to legislatures (or, for that matter, even the European Court) when authorizing compelled DNA sampling from arrestees, who should not forfeit genetic privacy interests simply by virtue of being arrested

Human-Centered Design to Address Biases in Artificial Intelligence

The potential of artificial intelligence (AI) to reduce health care disparities and inequities is recognized, but it can also exacerbate these issues if not implemented in an equitable manner. This perspective identifies potential biases in each stage of the AI life cycle, including data collection, annotation, machine learning model development, evaluation, deployment, operationalization, monitoring, and feedback integration. To mitigate these biases, we suggest involving a diverse group of stakeholders, using human-centered AI principles. Human-centered AI can help ensure that AI systems are designed and used in a way that benefits patients and society, which can reduce health disparities and inequities. By recognizing and addressing biases at each stage of the AI life cycle, AI can achieve its potential in health care

A Systematic Literature Review of Individuals\u27 Perspectives on Privacy and Genetic Information in the United States

Concerns about genetic privacy affect individuals\u27 willingness to accept genetic testing in clinical care and to participate in genomics research. To learn what is already known about these views, we conducted a systematic review, which ultimately analyzed 53 studies involving the perspectives of 47,974 participants on real or hypothetical privacy issues related to human genetic data. Bibliographic databases included MEDLINE, Web of Knowledge, and Sociological Abstracts. Three investigators independently screened studies against predetermined criteria and assessed risk of bias. The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically are you worried about genetic privacy, the general public, patients, and professionals frequently said yes. In many cases, however, that question was posed poorly or only in the most general terms. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data. They were more concerned about use by employers, insurers, and the government than they were about researchers and commercial entities. In addition, people are often willing to give up some privacy to obtain other goods. Importantly, little attention was paid to understanding the factor-sociocultural, relational, and media - that influence people\u27s opinions and decisions. Future investigations should explore in greater depth which concerns about genetic privacy are most salient to people and the social forces and contexts that influence those perceptions. It is also critical to identify the social practices that will make the collection and use of these data more trustworthy for participants as well as to identify the circumstances that lead people to set aside worries and decide to participate in research

Development of an Early Identification and Response Model of Malpractice Prevention

The dramatic rise in the incidence of malpractice claims over the past thirty years has revealed several problems with the U.S. system of medical dispute resolution. First, the sudden and unexpected increase in claims has created an insurance crisis wherein various medical specialists have had difficulty obtaining affordable insurance coverage. One such crisis occurred in Florida in the mid-1980\u27s, when an inability of many physicians to procure medical malpractice coverage caused some to limit or curtail their practice. This resulted in access problems for the public. This phenomenon has disproportionately befallen physicians practicing obstetric medicine. Second, besides contributing to periodic crises of access, the current medical dispute resolution system is often responsible for long delays in resolving claims and in compensating victims. Third, compensation is sometimes inequitable, encouraging frivolous suits and making the system expensive to operate. Finally, while there is no evidence that the system reduces bad care, it clearly contributes to increased cost by encouraging unjustified defensive medicine

The Law of Genetic Privacy: Applications, Implications, and Limitations

Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications