06 February 2015

Panopticism

'Rethinking Privacy' by William H. Simon in 20 October 2014 Boston Review comments 
Anxiety about surveillance and data mining has led many to embrace implausibly expansive and rigid conceptions of privacy. The premises of some current privacy arguments do not fit well with the broader political commitments of those who make them. In particular, liberals seem to have lost touch with the reservations about privacy expressed in the social criticism of some decades ago. They seem unable to imagine that preoccupation with privacy might amount to a “pursuit of loneliness” or how “eyes on the street” might have reassuring connotations. Without denying the importance of the effort to define and secure privacy values, I want to catalogue and push back against some key rhetorical tropes that distort current discussion and practice.
One problem is that privacy defenses often imply a degree of pessimism about the state inconsistent with the strong general public regulatory and social-welfare roles that many defenders favor. Another is a sentimental disposition toward past convention that obscures the potential contributions of new technologies to both order and justice. And a third is a narrow conception of personality that exalts extreme individual control over information at the expense of sharing and sociability.
Paranoia
In urban areas, most people’s activity outdoors and in the common spaces of buildings is recorded most of the time. Surveillance cameras are everywhere. When people move around, their paths are registered on building access cards or subway fare cards or automobile toll devices. Their telephone and email communications, Internet searches, and movements are tracked by telephone companies and other intermediaries. All their credit card transactions—which, for many people, means nearly all of their transactions—are documented by time, place, and substance. The health system extracts and records detailed information about their psychic and bodily functions. Anyone arrested, and many who fear arrest, in the criminal justice system typically surrender a variety of personal information and often have to submit to ongoing monitoring. Even within the home, water and energy consumption are monitored, and some people choose to install cameras to monitor children or protect against burglars.
To many people, this society looks like the panopticon—a prison designed as a circular tower so that the inmates can be easily observed by a centrally located authority figure. Jeremy Bentham originated the panopticon idea as a low-cost form of subjugation for convicted criminals. Michel Foucault adopted it as a metaphor for what he regarded as the insidiously pervasive forms of social control in contemporary society. To him, schools, hospitals, workplaces, government agencies all engaged in repressive forms of surveillance analogous to the panopticon.
In the United States, paranoid political style has been associated traditionally with the right and the less educated. But Foucault helped make it attractive to liberal intellectuals. His contribution was largely a matter of style. Foucault was the most moralistic of social theorists, but he purported to disdain morality (“normativity”) and refused to acknowledge, much less defend, the moral implications of his arguments. He gave intellectual respectability to the three principal tropes of the paranoid style.
First, there is the idea of guilt by association. The resemblance between some feature of a strikingly cruel or crackpot regime of the past or in fiction—especially in Nineteen Eighty-Four—and a more ambiguous contemporary one is emphasized in order to condemn the latter. Thus, the elaborate individualized calibration of tortures in eighteenth- and nineteenth-century penology is used to make us feel uncomfortable about the graduated responses to noncompliance in contemporary drug treatment courts. George Orwell’s image of television cameras transmitting images from inside the home to the political police is used to induce anxiety about devices that monitor electricity usage so that the hot water tank will re-heat during off-peak hours.
The paranoid political style has been associated with the right. Foucault brought it to liberals.
The second trope of the paranoid style is the portrayal of virtually all tacit social pressure as insidious. What people experience as voluntary choice is substantially conditioned by unconscious internalized dispositions to conform to norms, and a key mechanism of such conformity is the actual, imagined, or anticipated gaze of others. Almost everyone who thinks about it recognizes that such pressures are potentially benign, but people differ in their rhetorical predispositions toward them. The individualist streak in American culture tends to exalt individual choice in a way that makes social influence suspect.
Foucault disdained individualism, but he introduced a conception of power that was so vague and sinister that it could be applied to make almost any social force seem creepy. When Neil Richards writes in the Harvard Law Review that surveillance “affects the power dynamic between the watcher and the watched, giving the watcher greater power to influence or direct the subject of surveillance,” he is channeling Foucault. So is Julie Cohen, when she writes in the Stanford Law Review: “Pervasive monitoring of every first move or false start will, at the margin, incline choices toward the bland and the mainstream.”
We have come a far cry from Jane Jacobs’s idea of “eyes on the street” as the critical foundation of urban vibrancy. For Jacobs, the experience of being observed by diverse strangers induces not anxiety or timidity but an empowering sense of security and stimulation. It makes people willing to go out into new situations and to experiment with new behaviors. Eyes-on-the-street implies a tacit social pact that people will intervene to protect each other’s safety but that they will refrain from judging their peers’ non-dangerous behavior. Electronic surveillance is not precisely the same thing as Jacobean eyes-on-the-street, but it does offer the combination of potentially benign intervention and the absence of censorious judgment that Jacobs saw as conducive to autonomy.
The third trope of the paranoid style is the slippery slope argument. The idea is that an innocuous step in a feared direction will inexorably lead to further steps that end in catastrophe. As The Music Man (1962) puts it in explaining why a pool table will lead to moral collapse in River City, Iowa, “medicinal wine from a teaspoon, then beer from a bottle.” In this spirit, Daniel Solove in Nothing to Hide (2011) explains why broad surveillance is a threat even when limited to detection of unlawful activity. First, surveillance will sometimes lead to mistaken conclusions that will harm innocent people. Second, since “everyone violates the law sometimes” (think of moderate speeding on the highway), surveillance will lead to over-enforcement of low-stakes laws (presumably by lowering the costs of enforcement), or perhaps the use of threats of enforcement of minor misconduct to force people to give up rights (as for example, where police threaten to bring unrelated charges in order to induce a witness or co-conspirator to cooperate in the prosecution of another). And finally, even if we authorize broad surveillance for legitimate purposes, officials will use the authorization as an excuse to extend their activities in illegitimate ways.
Yet, slippery slope arguments can be made against virtually any kind of law enforcement. Most law enforcement infringes privacy. (“Murder is the most private act a man can commit,” William Faulkner wrote.) And most law enforcement powers have the potential for abuse. What we can reasonably ask is, first, that the practices are calibrated effectively to identify wrongdoers; second, that the burden they put on law-abiding people is fairly distributed; and third, that officials are accountable for the lawfulness of their conduct both in designing and in implementing the practices.
The capacity of broad-based electronic surveillance—the sort that collects data on large or indeterminate numbers of people who are not identified in advance—to satisfy these conditions is in some respects higher than that of the more targeted and reactive approaches that privacy advocates prefer. Such approaches rely heavily on personal observation by police and witnesses, reports by informants of self-inculpatory statements by suspects, and confessions. But these strategies have their shortcomings. Scholars in recent years have emphasized the fallibility of human memory and observation. Witness reports of conduct by strangers are often mistaken and influenced by investigators. Those who report self-inculpatory statements often have dubious motivations, and, with surprising frequency, even confessions prove unreliable.
Inferences from broad-based electronic surveillance are not infallible, but they are often more reliable than reports of personal observation, and they can be less intrusive. Computers programmed to identify and photograph red light violations make much more reliable determinations of the violation than a police officer relying on his own observation. And they are less intrusive: the camera can be set to record only when there’s a violation, whereas a police officer would observe and remember much more. Yet many civil libertarians, including some ACLU affiliates, oppose them. One of their key arguments is that the systems generate tickets in many situations where the driver might have had an excuse for not stopping in time that would have persuaded a police officer to dismiss the violation. (The case for excuse can still be made in court, but a court appearance would cost more than the ticket for many.) The argument is not frivolous, but it is a curiosity typical of this field that people concerned about the abuse of state power often oppose new technology in favor of procedures that give officials more discretion.
Broad-based surveillance distributes its burdens widely, which may be fairer. ...
Simon states
The substantive conception to which the advocates are most drawn is the notion of a right to control information about one’s self. James Whitman argues in the Yale Law Journal that this conception evolved through the democratization of aristocratic values. The aristocrat’s sense of self-worth and dignity depended on respect from peers and deference from subordinates, and both were a function of his public image. Image was thus treated as a kind of personal property. Whitman says this view continues to influence the European middle class in the age of equal citizenship. As the ideal was democratized, it came to be seen as a foundation for self-expression and individual development.
European law evolved to express this cultural change. Whitman showed that the idea of a right to control one’s public image underlies French and German privacy law, and it appears to animate European Union privacy law, which advocates admire for its stronger protections than those of U.S. law. For example, French and German law impose stricter limits on credit reporting and the use of consumer data than U.S. law. The EU directive mandates that individuals be given notice of the data collection practices of those with whom they deal and rights to correct erroneous data about them. More controversially, a proposed revision prohibits decisions based “solely on automatic data processing” for various purposes, including employment and credit. By contrast, U.S. law tends to be less protective and less general. Its privacy law tends to be sector-based, with distinctive regulations for health care, education, law enforcement, and other fields.
Whitman associates the weaker influence of the idea of personal-image control in the United States with the stronger influence here of competing libertarian notions that broadly protect speech and publication. Expansive notions of privacy require a more active state to enforce them. This was recently illustrated by a decision of the EU Court of Justice holding that the “right to be forgotten” may require removal from an Internet website of true but “no longer relevant” information about the plaintiff’s default on a debt. The prospect of courts reviewing Internet data to determine when personal information is “no longer relevant” has emphasized the potential conflict between privacy and other civil rights.
But reservations about the broad conception of dignity Whitman describes go deeper. There is a powerful moral objection to it grounded in ideals of sociability. Even in Europe, during the period in which the ideal was democratized, there was a prominent critique of it. A character in a nineteenth-century English novel preoccupied with controlling his public image is likely to be a charlatan or a loser. Not for nothing is Sherlock Holmes the most prominent hero in the canon. His talents are devoted to invading the privacy of those who would use their image-management rights to exploit others. And as he teaches that the façade of self-presentation can be penetrated by observation and analysis of such matters as frayed cuffs, scratches on a watch, or a halting gait, he sets up as a competing value the capacity to know and deal with people on our terms as well as theirs.
He goes on to argue that privacy advocates
object most strongly to data collection designed to yield specific conclusions about the individual, but they persist even when anonymized data is used to assess general patterns. Since anonymization is never perfectly secure, it exposes people to risk. Moreover, the privacy norm sometimes shades into a property norm. It turns out that some people carry around economically valuable information in their bodies—for example, the DNA code for an enzyme with therapeutic potential—and that information about everyone’s conduct and physical condition can, when aggregated, be sold for substantial sums. For some, the extraction of such information without consent looks like expropriation of property. They would like to see explicit extension of property rights to require consent and compensation for use of personal information. In Who Owns the Future? (2014) Jaron Lanier develops this line of thought, suggesting that we create institutions that enable individuals to monetize their personal data—individual accounts would be credited every time a piece of data is used.
In addressing such issues, a lot depends on how we understand consent. Consent can mean clicking on an “I agree to the terms” button that refers to a mass of small-print boilerplate that hardly anyone can be expected to read. Or it may mean simply the failure to find and click on the button that says “I refuse consent.” The advocates want something more demanding. Moreover, they don’t want the cost of the decision to be too high. If insisting on privacy means exclusion from Google’s search tool or Amazon’s retail service, many proponents would view that as unfair. If Google or Amazon charged a price for not mining your data, many would call it extortion—like asking someone to pay in order not to be assaulted. So the idea of “consent” touches on deep and unresolved issues of entitlement to information.
Such issues have arisen in connection with employer-sponsored wellness programs that encourage employees to get checkups that include a “health risk assessment” designed to generate prophylactic advice. At Pennsylvania State University such a program recently provoked a wave of privacy protests, apparently directed to parts of a questionnaire that addressed marital and job-related problems, among other things. The protesters also objected that the questionnaires would be analyzed by an outside consultant, even though the information would be subject to the confidentiality provisions of the federal Health Insurance Portability and Accountability Act. The University allowed people to refuse to participate subject to a $100 per month surcharge.
The strong privacy position has disturbing implications for medical research.
No doubt such programs may be unnecessarily intrusive and may not safeguard information adequately, but the objections made in this case do not appear to have depended on such concerns. The $100 surcharge was based on an estimate of the average additional health costs attributable to refusal to participate. The premise of the protests seems to have been that the interest in not disclosing this information even under substantial safeguards is important enough that those who disclose should be asked to subsidize those who do not. ...
The reciprocity theme occasionally surfaces in privacy discussion. Lanier’s proposal to monetize data arises from a sense of injustice about the relative rewards to, on the one hand, data-mining entrepreneurs and high-tech knowledge workers, and on the other, the masses of people whose principal material endowment may be their control over their own personal information. In the health sector, doctors have been caught trying to derive patent rights from information embedded in their patients’ DNA without informing the patients.
But privacy advocates rarely acknowledge the possibility that average reciprocity of advantage will obviate over time the need for individual compensation in some areas. Might it be the case, as with airplanes and zoning laws, that people will do better if individual data (anonymized where appropriate) is made freely available except where risks to individuals are unreasonably high or gains or losses are detectably concentrated? There will always be a risk that some data will be disclosed in harmful ways, such as when personal data leaks out because of ineffective anonymization. However, the key question is whether we will make a social judgment about what level of risk is reasonable or whether we shall accord property rights that allow each individual to make her own risk calculus with respect to her own data.
The latter approach would likely preclude valuable practices in ways analogous to what would happen if airlines had to get owners’ consent for passing over private property. Moreover, strengthening rights in personal data could exacerbate, rather than mitigate, distributive fairness concerns. While it is surely unfair for doctors to earn large capital gains from DNA extracted without consent, wouldn’t it also be unfair (admittedly in a lower key) for Freedom Box users to benefit from the Center for Disease Control’s mining of Google searches for new viruses while denying access to their own Internet searches?
The strong privacy position has disturbing implications for medical research. In the past, medicine has strongly separated research from treatment. Research is paradigmatically associated with randomized controlled clinical trials. Treatment experience has been considered less useful to research because treatment records do not describe the condition of the patient or the nature of the intervention with enough specificity to permit rigorous comparisons. But information technology is removing this limitation, and, as the capacity to analyze treatment information rigorously increases, the quality of research could improve as its cost lowers.
However, this development is in some tension with expansive conceptions of privacy. A prominent group of bioethicists led by Ruth Faden of Johns Hopkins has recently argued that the emerging “learning health care system” will require a moral framework that “depart[s] in important respects from contemporary conceptions of clinical and research ethics.” A key component of the framework is a newly recognized obligation on the part of patients to contribute to medical research. The obligation involves a duty to permit disclosure and use of anonymized treatment data for research purposes and perhaps also to undergo some unburdensome and non-invasive examination and testing required for research but not for individual treatment. (Anonymization is unlikely to be effective with data made generally available online, but regimes involving selective and monitored disclosure have proven reliable.) The group justifies its proposal in terms of reciprocity values. Since everyone has a good prospect of benefiting from research, refusing to contribute to it is unfair free riding.
Of course, the reciprocity idea assumes that researchers will make the fruits of the research derived from patient information freely available. People would be reluctant to agree to make a gift of their information if researchers could use it to make themselves rich. Effective constraints on such conduct should be feasible. Much medical research, including much of the highest value research, has been and continues to be done by salaried employees of charitable corporations.
Applied in this context, Lanier’s proposal to monetize individual data looks unattractive. There is a danger that a lot of valuable information would be withheld or that the costs of negotiating for it would divert a lot of resources from research and treatment. It is not clear what the resulting redistributive effects would be. Perhaps they would approximate a lottery in which the only winners would be a small number of people with little in common except that they happened to possess personal information that had high research value at the moment. At a point where we do not know who the winners will be, we would all be better off giving up our chances for a big payoff in return for assurance that we will have free access to valuable information. We can do this by treating the information as part of a common pool.

Chills and soft power

'The Conforming Effect: First Amendment Implications of Surveillance, Beyond Chilling Speech' by Margot E. Kaminski and Shane Witnov in (2015) 49 University of Richmond Law Review comments
First Amendment jurisprudence is wary not only of direct bans on speech, but of the chilling effect. A growing number of scholars have suggested that chilling arises from more than just a threat of overbroad enforcement — surveillance has a chilling effect on both speech and intellectual inquiries. Surveillance of intellectual habits, these scholars suggest, implicates First Amendment values. However, courts and legislatures have been divided in their understanding of the extent to which surveillance chills speech and thus causes First Amendment harms.
This article brings First Amendment theory into conversation with social psychology to show that not only is there empirical support for the idea that surveillance chills speech, but surveillance has additional consequences that implicate multiple theories of the First Amendment. We call these consequences “the conforming effect.” Surveillance causes individuals to conform their behavior to perceived group norms, even when they are unaware that they are conforming. Under multiple theories of the First Amendment — the marketplace of ideas, democratic self-governance, autonomy theory, and cultural democracy — these studies suggest that surveillance’s effects on speech are broad. Courts and legislatures should keep these effects in mind.
'Who Runs the International System? Power and the Staffing of the United Nations Secretariat' (Harvard Business School BGIE Unit Working Paper No. 15-018) by Paul Novosad and Eric Werker comments 
National governments frequently pull strings to get their citizens appointed to senior positions in international institutions. We examine, over a 60 year period, the nationalities of the most senior positions in the United Nations Secretariat, ostensibly the world's most representative international institution. The results indicate which nations are successful in this zero-sum game, and what national characteristics correlate with power in international institutions. The most overrepresented countries are small, rich democracies like the Nordic countries. Statistically, democracy, investment in diplomacy, and economic/military power are predictors of senior positions ― even after controlling for the U.N. staffing mandate of competence and integrity. National control over the United Nations is remarkably sticky; however the influence of the United States has diminished as U.S. ideology has shifted away from its early allies. In spite of the decline in U.S. influence, the Secretariat remains pro-American relative to the world at large.
'Human Rights, Southern Voices, and ‘Traditional Values’ at the United Nations' (University of Michigan Public Law Research Paper No. 419) by Christopher McCrudden comments 
The ‘traditional values’ resolutions, passed by the UN Human Rights Council in 2009, 2011, and 2012, were the result of a highly controversial initiative spearheaded by Russia aiming to identify a set of traditional values that underpin international human rights law. This paper considers several critical questions that arise from these Resolutions. Do these ‘traditional values’ indeed underpin human rights? Why are traditional values valuable from the point of view of adherents to that tradition? Should the larger society take into account the fact that a practice is based on tradition in deciding whether or not to override it in the name of human rights? Put more technically, in what does the normativity of tradition lie, for adherents and non-adherents of that tradition? These are the questions that this essay explores, in the context of the recent debates over the scope and meaning of human rights stimulated by the Human Rights Council Resolutions. Much of the support for the Resolutions comes from what can broadly be called the global South. In several books, particularly “Human Rights, Southern Voices”, and “General Jurisprudence: Understanding Law from a Global Perspective” William Twining has explored the question of how to reconcile human rights norms and belief systems embedded in the global South (including ‘traditional values’), and in doing so has drawn particular attention to intellectuals from that part of the world, in particular Francis Deng, Yash Ghai, Abdullahi An-Na’im, and Upendra Baxi. I suggest that those concerned to recognize the legitimate concerns that significant sections of the global South have about the human rights project, concerns reflected in the ‘traditional values’ Resolutions would do well to pay more attention to the ‘Southern voices’ on whom Twining rightly focuses attention.

Surveillance and Snowden

'Lawful Illegality: What Snowden Has Taught Us About the Legal Infrastructure of the Surveillance State' by Lisa M. Austin comments
The Snowden revelations have revealed to us, with impressive documentation, the technical infrastructure of contemporary state surveillance. What is less obvious, but of great importance, is the revelation of the legal infrastructure of this surveillance. We need to stop thinking that the issue is illegal activity on the part of our national security agencies and instead start from the proposition that our national security agencies do understand themselves to be acting within the law. The problem, I argue, is that this legal infrastructure is best understood as one of “lawful illegality.”
Unlike other discussions of the rule of law and terrorism, which have focused on the nature of emergencies and the perceived need to preserve executive discretion to respond to exceptional circumstances, I argue that state surveillance raises a very different rule of law question. Surveillance is a mode of rational social ordering and the question is whether it is in conflict with the deepest commitments of law as a mode of rational social ordering.
I claim that the issues of secrecy, complexity, and jurisdiction work together to create “lawful” paths for state surveillance for national security purposes that are nevertheless in deep tension with a general commitment that this surveillance be subject to the oversight and accountability demanded by the rule of law. Throughout, I illustrate these issues with a set of examples largely taken from the Snowden revelations, with a Canadian perspective. These examples are not meant to provide an exhaustive overview of the issues but to highlight the importance of attending to these larger questions of legality if we are going to move forward and design a better system of oversight.
'The Vengeful State: Responses by Democratic Governments to Unauthorized Public Disclosure of National Security Information' (RegNet Research Paper No. 2014/42) by Peter Grabosky comments 
Recent disclosures by Bradley (now Chelsea) Manning and Edward Snowden have rekindled interest in the tension between state secrecy and the public’s right to know. In authoritarian political systems this is a non-issue, as there is neither pretence on the part of the state, nor expectation on the part of its citizens, that national security information should become the subject of public debate. By contrast, the difficulties faced by liberal democracies are real. While hardly anyone would suggest that national security should be managed in an environment of complete transparency, there are many who suggest that citizens of a democracy are entitled to know about acts of questionable propriety that have been committed by their government on their behalf. And prospectively, it is important for citizens to be party to informed discussion about whether the policies that may lead to these acts are misguided or not. This chapter addresses responses of democratic states to the unauthorised public disclosure of national security information. It is not concerned with espionage, the clandestine provision of one state’s confidential information to another. The analysis is based on five prominent cases, each occurring in one of five liberal democracies: France, Britain, Switzerland, Israel and the United States. Each case will examine the disclosure in question, whether the information revealed was indicative of illegality on the part of the state, and the media through which they were disclosed. It will then discuss the mobilization of law by the aggrieved government, including whether the state violated the law in the course of its response. The concluding section of this chapter will look back at the original disclosures and will address two fundamental questions: Was the information appropriately classified in the first place? What harm to national security resulted from the various disclosures?
'National Security Leaks and Constitutional Duty' by Alexander J. Kasner in (2015) 67(1) Stanford Law Review comments 
Edward Snowden’s disclosure of national security information is the newest chapter in the United States’ long and complicated history with government leaks. Such disclosures can help to root out illegal and unconstitutional behavior that might otherwise evade scrutiny. And yet, unlike the press, government leakers are often assumed to have no claim to constitutional protections. National security leaks are treated as an opportunity to discuss the constitutionality of underlying government conduct or the balance of federal powers, but there is little reflection on the leaker who made the discussion possible.
This Note addresses that oversight by focusing our attention on the Constitution’s treatment of government officials who choose to leak. In so doing, it asks us to consider the duty of executive officers to affirmatively support the Constitution, itself required by the very text of the Article VI Oath Clause. This Note presents one of the first concentrated studies of the Article VI Oath Clause, drawing upon its text, structure, and history to draw out the obligation it places on executive officers to resist unconstitutional government behavior. It also explains how recent developments in national security, secret keeping, and the doctrine of standing render the Article VI duty even more critical. At the same time, this Note departs from other literature by recognizing that unfettered disclosures of broad swaths of information are constitutionally indefensible. I contend that the Article VI duty should generally be limited to Article II executive officers, that it endorses some but not all affirmative disclosures, and that it anticipates constitutional interpretation as a shared enterprise between the judiciary and those officers. This Note concludes by discussing the implications of the duty, both suggesting potential legal and policy solutions and reflecting on our assumptions about constitutional interpretation and enforcement.

Copying

'Piracy by Approval Social Norms, Deterrence, and Copyright Compliance in China' (UC Irvine School of Law Research Paper No. 2015-03) by Benjamin Van Rooij, Yunmei Wu and Adam Dupree Fine comments 
Using a sample of 862 colleges students from China this study seeks to understand how perceived enforcement, behavior and attitudes of others, or the students’ own characteristics affect their inclination to illegally download software. The survey results show a strong influence of sanction severity, descriptive and injunctive social norms, less effect of apprehension probability, and no effect of the students’ rule conditionality. Most importantly, it finds that when social norms support piracy, deterrence is blunted. These findings have important implications for enforcement practice, showing how the prevalent Chinese mode of campaign driven deterrence-based enforcement will not work as long as social norms do not change first. Theoretically the study shows how key assumptions in the existing Western literature on enforcement and compliance may not hold true in China. Thus the study presents a warning that cross-national replication outside of Western contexts is an urgent necessity.

01 February 2015

Genomics

The US President - echoing the UK 100,000 Genomes Project - has announced the large-scale Precision Medicine Initiative. It will draw on data from a million people and will involve National Institutes of Health (NIH), together with the Food and Drug Administration (FDA), and the Office of the National Coordinator for Health Information Technology (ONC) .

The announcement is another inflection point in genomics research.

The Initiative encompasses -
  • $130 million to NIH for development of a voluntary national research cohort of a million or more volunteers to propel our understanding of health and disease and set the foundation for a new way of doing research through engaged participants and open, responsible data sharing. 
  • $70 million to the National Cancer Institute (NCI), part of NIH, to scale up efforts to identify genomic drivers in cancer and apply that knowledge in the development of more effective approaches to cancer treatment. 
  • $10 million to FDA to acquire additional expertise and advance the development of high quality, curated databases to support the regulatory structure needed to advance innovation in precision medicine and protect public health. 
  •  $5 million to ONC to support the development of interoperability standards and requirements that address privacy and enable secure exchange of data across systems.
The expectation is that the Initiative will involve
  •  More and better treatments for cancer: NCI will accelerate the design and testing of effective, tailored treatments for cancer by expanding genetically based clinical cancer trials, exploring fundamental aspects of cancer biology, and establishing a national “cancer knowledge network” that will generate and share new knowledge to fuel scientific discovery and guide treatment decisions. 
  • Creation of a voluntary national research cohort: NIH, in collaboration with other agencies and stakeholders, will launch a national, patient-powered research cohort of one million or more Americans who volunteer to participate in research. Participants will be involved in the design of the Initiative and will have the opportunity to contribute diverse sources of data—including medical records; profiles of the patient’s genes, metabolites (chemical makeup), and microorganisms in and on the body; environmental and lifestyle data; patient-generated information; and personal device and sensor data.   ...
  • Public-private partnerships: The Obama Administration will forge strong partnerships with existing research cohorts, patient groups, and the private sector to develop the infrastructure that will be needed to expand cancer genomics, and to launch a voluntary million-person cohort. The Administration will call on academic medical centers, researchers, foundations, privacy experts, medical ethicists, and medical product innovators to lay the foundation for this effort, including developing new approaches to patient participation and empowerment. The Administration will carefully consider and develop an approach to precision medicine, including appropriate regulatory frameworks, that ensures consumers have access to their own health data – and to the applications and services that can safely and accurately analyze it – so that in addition to treating disease, we can empower individuals and families to invest in and manage their health.
The White House media release notes a "Commitment to protecting privacy"
  • To ensure from the start that this Initiative adheres to rigorous privacy protections, the White House will launch a multi-stakeholder process with HHS and other Federal agencies to solicit input from patient groups, bioethicists, privacy, and civil liberties advocates, technologists, and other experts in order to identify and address any legal and technical issues related to the privacy and security of data in the context of precision medicine. 
  • Regulatory modernization: The Initiative will include reviewing the current regulatory landscape to determine whether changes are needed to support the development of this new research and care model, including its critical privacy and participant protection framework. As part of this effort, the FDA will develop a new approach for evaluating Next Generation Sequencing technologies — tests that rapidly sequence large segments of a person’s DNA, or even their entire genome. The new approach will facilitate the generation of knowledge about which genetic changes are important to patient care and foster innovation in genetic sequencing technology, while ensuring that the tests are accurate and reliable.

Metrics of Pain and Damages

'Estimating Pain and Suffering Damages - Paths are Many, Loss is One' by Ronen Avraham in Oxford Handbook of Law and Economics (Forthcoming) comments -
Opponents of pain and suffering damages argue that, unlike pecuniary damages, pain and suffering damages are hard to quantify accurately. They argue that victims exaggerate their losses to receive higher damage awards, so that awarding pain and suffering damages may frustrate the function of tort law by compensating the victims too highly and arbitrarily. Another argument against pain and suffering damages is that the difficulty in objective measurement leaves the potential for enormous variance in awards at the discretion of individual judges and juries. This individual discretion may create a lack of horizontal equity and thus impede consistency among awards for like victims.
In a recent paper I argued that from a law and economics perspective pain and suffering damages should be fully compensated and should receive the same “respect” that economic damages receive (Avraham, 2015). I provided several arguments for that view. In this chapter I survey a number of solutions discussed in the literature on how to simplify the estimation of pain and suffering damages to cut administrative costs. My goal is to demonstrate the feasibility of the task of estimating the loss more than to recommend any specific path to it.
Avraham argues -
When a person is injured, tort law recognizes several types of losses: the victims’ economic loss (actual medical costs and diminished earning capacity) and non-economic loss, which serves as a catch-all for many losses, such as pain-andsuffering, mental anguish, emotional distress, and loss of enjoyment of life. Historically, the common law recognized pain and suffering losses only in intentional torts. In negligence claims, by contrast, the common law implicitly, and sometimes explicitly, expected the plaintiff to get over it. Over the years as courts have started to award pain and suffering damages in negligence cases, courts have struggled to clearly define and distinguish different aspects of these damages (Whaley, 1992).
One of the consequences of this struggle is the emergence of a confusing array of terms which are meant to elucidate the content and scope of pain and suffering damages. Courts refer, among other terms, to “mental anguish”, “emotional losses”, “emotional distress”, “loss of consortium”, “hedonic damages”, and “psychic damages” (Croley & Hanson, 1995). With so many different terms, it is no wonder that confusion has been rampant. For example, damages for loss of enjoyment of life, alternatively known as “hedonic damages,” are intended to compensate for the loss of quality of life (Schwartz, 2004). Some courts have had significant difficulties interpreting this term, and have even expressed doubts about “whether loss of enjoyment of life is compensable at all, and if so, whether it is part of pain and suffering, mental anguish, or physical impairment, or is a separate, independent category of damages.” Golden Eagle Archery, Inc. v. Jackson, 116 S.W.3d 757, 768 (Tex. 2003); (Schwartz and Silverman, 2004).
While most jurisdictions treat loss of enjoyment of life, or hedonic loss, as a part of pain and suffering, other jurisdictions allow recovery of hedonic damages as a separate category of damages. In yet other states there is either no clear ruling or hedonic damages are allowed in some instances and not in others (Schwartz and Silverman, 2004).
With respect to their content, some courts have indicated that these awards compensate for “the inability to perform activities which had given pleasure to this particular plaintiff.” McGarry v. Horlacher, 775 N.E.2d 865, 877-78 (Ohio Ct. App. 2002). Other courts have treated hedonic damages not as affirmative distress or suffering, but forgone gains, such as being unable to engage in activities that the victim valued, such as athletics or sex. Day v. Ouachita Parish School Bd., 823 So. 2d 1039, 1044 (La ct. App. 2002); Allen v. Wal-Mart Stores, Inc., 241 F.3d 1293, 1297 (10th Cir. 2001); Varnell v. Louisiana Tech University, 709 So. 2d 890, 896 (La. Ct. App. 1998). Some court have anchored them in the loss of something recognizable such as a limb or mental capacity. Pierce v. N.Y. Cent.R.R.Co., 409 F.2d 1392 (Mich. 1969); Matos v. Clarendon Nat. Ins. Co., 808 So. 2d 841, 849 (La. Ct. App. 2002); Kirk v. Wash. State Univ., 746 P.2d 285, 292 (Wash. 1987); Nemmers v. United States, 681 F. supp 567 (C.D. Ill. 1988).
With so much inconsistency and indeterminacy, one should not wonder that pain and suffering damages are under constant attack and are a major component of every tort reform.
Opponents of pain and suffering damages argue that, unlike pecuniary damages, pain and suffering damages are hard to quantify accurately (King, 2004). They argue that victims exaggerate their losses to receive higher damage awards, so that awarding pain and suffering damages may frustrate the function of tort law by compensating the victims too highly and arbitrarily.
Another argument against pain and suffering damages is that the difficulty in objective measurement leaves the potential for enormous variance in awards at the discretion of individual judges and juries (Diamond, 1998). This individual discretion may create a lack of horizontal equity and thus impede consistency among awards for like victims (Bovbjerg, 1989).
In a recent paper I argued that from a law and economics perspective pain and suffering damages should be fully compensated and should receive the same “respect” that economic damages receive (Avraham, 2015). I provided several arguments for that view.
First, I argued that the lack of horizontal equity might not represent a problem with damage calculations. Factfinders may treat like cases differently, but there is another possible explanation for heterogeneity in awards for injuries that, on the surface, appear to be “the same.” Judges and juries may be aware that there is great variation in how individuals subjectively experience pain and suffering (Chamallas & Wriggins, 2010). In other words, factfinders in individual cases are aware of facts that are not available to researchers afterward. Moreover, empirical evidence shows that observable seriousness of the injury is a reliable predictor of the size of award (Sloan & Hsieh, 1990; Vidmar, 1999; Diamond, 1998). Another indication that pain and suffering awards are not as wildly variant as some critics claim is that even though European countries have implemented rules to minimize horizontal inequity in damage awards, European pain and suffering awards are similar to those in the U.S. (Sugarman, 2005). Still, even if there is real horizontal inequity in pain and suffering awards, the conclusion that they should be abolished does not follow. Rather, the inequity merely indicates the need for a more determinate process for factfinders to follow. Just because damages are difficult to quantify does not mean they should be ignored. Tort damages have traditionally been understood to contemplate individualized pain and suffering, at least in intentional torts. The difficulty of quantification and the lack of horizontal equity it might cause does not justify setting them all at zero.
Second, pain and suffering damages are not the only kind that proves difficult to quantify. Economic damages are often equally difficult (Rabin, 1993). Lost wages and future medical expenses, for instance, have been drastically miscalculated by courts, showing that even these pecuniary losses are difficult to estimate precisely. Seffert v. Los Angeles Transit Lines, 364 P.2d 337 (Cal. 1961). There is no justification to single out for elimination pain and suffering damages from among all the difficult-to-quantify categories of damages.
Third, the mere fact that some plaintiffs may exaggerate their symptoms provides no justification to eliminate pain and suffering damages. Courts have developed methods of correcting for this possibility. They have been estimating pain and suffering losses in intentional tort cases for centuries. Fourth and perhaps most importantly, scientific developments in the field of neuroimaging are creating the possibility of understanding and even verifying both pain and some emotional conditions (Kolber, 2007). One recent study successfully used fMRI processes to identify specific neurologic signatures that identified pain sensation with very high accuracy levels (Wager, Atlas, Linquist, Roy, Woo & Kross, 2013). It is possible that science will soon be able to verify an accident victim’s subjective level of pain. Exaggeration may soon be impossible because judges and juries may have access to objective, scientific methods of quantifying pain and suffering as accurately as the quantification methods available for physical damages.
Already, depression can by objectively determined by neurobiological data. A summary of key literature in the area of Major Depressive Disorder (MDD) found that MDD is an “illness with significant neurobiological consequences involving structural, functional and molecular alterations in several areas of the brain” (Maletic, Robinson, Oakes, Lyengar, Ball & Russell, 2007). Similar strides are being made in the context of Post-Traumatic Stress Disorder (PTSD). The American Psychiatric Association has established guidelines for verifying the existence of PTSD. These include direct trauma, intrusion symptoms such as dreams or memories, avoidance symptoms, mood and cognition changes, and irritable behavior or startled responses (American Psychiatric Association, 2013). These symptoms must persist for longer than a month and cause significant personal problems. Even though diagnosis depends partly on self-reporting, the scientific progress in the area does provide an objectively verifiable method for assessing pain and suffering related to PTSD.
This kind of scientific progress is especially important as a potential response to the problem of malingering, which is when an individual continues to report pain even after it has stopped for the purpose of extending disability benefits or inflating a damage award (Cunnien, 1997). It is hard to estimate malingering, but it may be a factor in 34% to 40% of chronic pain cases (Mittenberg, 2002; Gervais, 2001; Kolber, 2007). Further, studies show that treatment outcomes are worse for people involved in personal injury litigation than for those who do not seek compensation (Mendelson, 1997). Even if the litigation is a cause of malingering, it could be because the stressors and delays of the tort system retard the healing process. Or, people who are prone to poor treatment may also be more likely to file a lawsuit. Recent scientific advances may obviate the need for this type of speculation by creating objectively verifiable pain metrics.
In sum, the best solution for dealing with the high cost of administrating pain and suffering damages and the alleged variation in horizontal quality is to reduce the cost of administration and increasing uniformity, not limit plaintiffs’ recoveries. The best way to accomplish this is via simplifying ways to estimate pain and suffering losses. In this chapter I survey a number of solutions discussed in the literature on how to simplify the estimation of pain and suffering damages to cut administrative costs. My goal is to demonstrate the feasibility of the task of estimating the loss more than to recommend any specific path to it.

Victorian FOI Changes

More changes to Victoria's Freedom Of Information regime, with the Age reporting -
In his first major interview as Special Minister of State, Labor MP Gavin Jennings outlined plans to arrest a decline in the public service, replace the Freedom of Information commissioner with a new "public access counsellor" and grant the anti-corruption watchdog long-awaited authority to examine the misconduct of MPs. ...
Vowing to be more transparent than Labor has been in the past, Mr Jennings told The Sunday Age: "We want to be a government that actually rebuilds the community's confidence in the accountability and the openness of government." "We accept the community's assessment that governments generally have been too reluctant to open decision-making processes to the community's scrutiny, and we think they have been too defensive … rather than embracing the fact that public scrutiny is appropriate."
Under the changes:
  • The FOI commissioner will be converted into a new Office of the Public Access counsellor, which will have the authority to review decisions made by ministers and departments and deemed cabinet-in-confidence. 
  • The time limit for departments to respond to FOI requests will reduce from 45 to 30 days, and the time limit to consider review decisions will be reduced from 60 to 15 days. 
  • The Independent Broad-based Anti-Corruption Commission will get the power to investigate misconduct in public office and undertake preliminary investigations before deciding whether to dismiss or pursue complaints. (This is similar to proposals introduced under the previous government, but not voted on before parliament adjourned for the election.) 
  • The auditor-general will have the authority to scrutinise public private partnerships through long-awaited "follow the dollar" laws, and will also be asked to help the government reduce wasteful taxpayer-funded advertising.
In his newly created role, Mr Jennings will be responsible for overseeing the integrity changes. He warned that legislation may not be introduced until the end of the year because of their complex nature. ...
Asked if revamping the bureaucracy meant boosting staff numbers, given thousands of jobs had been lost over the past four years, Mr Jennings replied: "Certainly capability has already been brought back in, but it may actually mean that we do, over time and within financial constraints, reinvest in the workforce across the public service".
The government's new policies come after a period of significant change to Victoria's integrity regime. Although the Baillieu/Napthine governments created IBAC and the FOI Commissioner [background here and in a Privacy Law Bulletin article last year] after Labor failed to establish either despite 11 years of office, it was widely criticised for failing to give the agencies enough power.
The office of FOI Commissioner Lynne Bertolini, for instance, was branded a toothless tiger because it did not have the ability to review decisions by ministerial offices or department heads, and at one point, was unable to meet its own review deadlines because of the volume and complexity of requests, and a general lack of staff.
IBAC has also come under scrutiny in recent years, particularly because the threshold to conduct investigations was seen as too high, prompting fears that some corruption could be falling through the cracks. Mr Jennings said the government would consult widely to work out what changes the corruption-busting agency may need.