Wednesday, June 18, 2014
Last summer, Pennsylvania State University was rocked back on its heels by faculty protesting a controversial new wellness program, “Take Care of Your Health.” [See Inside Higher Education.] By November, Penn State had paused the program and formed a Health Care Task Force (6 faculty, 2 staff, and 5 administrators) to explore alternative ways to control health care costs – the wellness program’s goal.
The Task Force submitted its report in late April 2014, criticizing the wellness program’s rollout for lack of transparency and poor communication – a glaring error in the wake of the Sandusky scandal. The Task Force was asked to present alternative health cost control measures for further consideration. It did a pretty good job on that score, mentioning putting third party health plan administration fees and pharmacy benefit plans out for new bids, using reference-based pricing for health care services, and using the American Board of Internal Medicine Foundation’s Choosing Wisely as a model for providing information about treatment choices and costs, among other options.
With respect to wellness programs, the Task Force determined:
workplace wellness programs appear to have, at best, a small but statistically significant short-run impact on some employee health behaviors, most notably smoking cessation and weight loss, but the longer run effects are still unclear. And, to the extent that these programs generate cost savings, they seem to arise from intensive disease management [for employees with chronic diseases]. Lifestyle management programs appear to be, at best, a breakeven proposition, and in many cases may cost more than they save in health care costs.
Without explicitly recommending against instituting a wellness program, it concluded, “The mixed success of such programs that is noted in the academic review section, in conjunction with the negative response to the recent “Take Care of Your Health” initiative at Penn State, suggests that this option would need careful thought and consultation if implementation were being considered.”
Monday, June 16, 2014
Guest Blogger Associate Dean and Professor Alicia Ouellette- Legal Issue or Culture War: Conversion Therapy in the Courts and Beyond
Last week, the Texas Republican Party adopted into its 2014 platform a passage that endorses so-called conversion or reparative therapy— a controversial but long-standing practice designed to alter an individual’s sexual orientation from homosexual to heterosexual. Not only did the party “recognize the legitimacy and value of counseling which offers reparative therapy and treatment to patients who are seeking escape from the homosexual lifestyle,” it declared that “No laws or executive orders shall be imposed to limit or restrict access to this type of therapy.”
The action by the Texas GOP raises the stakes in an increasingly contentious battle. Therapists of various stripes have attempted to convert homosexuals into heterosexuals since at least 1869. Early efforts took extreme forms. These included testicular transplants, hormone treatments, exorcisms, and various forms of aversion therapy— including electric shock or nausea-inducing drugs administered simultaneously with the presentation of homoerotic stimuli. In its modern form, conversion therapy involves psychoanalysis, talk therapy, and hypnosis. These forms of conversion therapy “are rooted in Freud’s idea that people are born bisexual and can move along a continuum from one end to the other.” Modern conversion therapists differ from their Freudian predecessors in that they theorize that humans are innately heterosexual and that it is environmental factors— early sexual abuse, overbearing mothers, and detached fathers—that cause homosexuality. As such, these practitioners believe that “sexual orientation can be reshaped.” 
Whatever its form or theoretical basis, conversion therapy has fallen out of favor. In 2009, the American Psychological Association denounced conversion therapy, and it has since been widely recognized that the practice is not effective and may cause or exacerbate psychological harm. Indeed, virtually every major health and mental health organization, including the AMA, the American Psychiatric Association, and the Pan American Health Organization, have questioned the scientific validity of conversion therapy, cautioned against its use, and warned that it threatens harm to the health and wellbeing of affected people. The organizational positions reflect the troubling stories told by survivors of conversion therapy, detailing humiliation, self-loathing, rejection, and suicidal feelings, as well as studies, such as this one, finding that conversion therapy patients are significantly more likely than their homosexual peers to report depression and eight times more likely to attempt suicide.
HealthLawProf Blog would like to thank our May guest bloggers Associate Professor Jonathan Todres, Professor Thomas (Tim) Greaney, Professor Nadia Sawicki and Professor John V. Jacobi. Here is a short recap of their posts:
Associate Professor Jonathan Todres posted the following: Human Rights and the Social Determinants of Health, Tobacco Related Harms Extend to Children Who Harvest It, Health Care and Human Trafficking, and Incorporating Experiential Learning in Health Law Courses.
Professor Thomas (Tim) Greaney posted the following: Antitrust and the Physician Land Rush, and The Affordable Care Act, Antitrust and Competition Policy.
Professor John. V. Jacobi posted the following: Post-Enrollment: Ensuring Successful Follow-Through for Health Reform, Ensuring Successful Reform Follow-Through, Part 2: Affordability, and Ensuring Successful ACA Follow-Through Part 3: Undocumented Immigrants.
On Thursday & Friday, July 17 & 18, 2014, Hiram College’s Center for Literature and Medicine and the Northeast Ohio Medical School (NEOMED) will jointly sponsor a Summer Seminar at Hiram College (Hiram, OH) with up to 12 hours of Continuing Professional Education credit for Medicine (AMA PRA Category 1 Credits™) and Pharmacy available.
National leaders in Age Studies, Disability Studies, and Health Humanities will lead small group discussions in sharing experiences and ideas in an intimate setting.
Featured Keynote Sessions led by:
Anne Basting, Ph.D. (Professor of Theatre, University of Wisconsin Milwaukee, Founder and President of TimeSlips Creative Storytelling)
Thomas Cole, Ph.D. (Director, McGovern Center for Humanities and Ethics, University of Texas Medical School at Houston)
Rebecca Garden, Ph.D. (Associate Professor of Bioethics and Humanities, SUNY Upstate Medical University)
Laurie Clements Lambeth, Ph.D. (Award-Winning Poet and Faculty in Medicine and Society at the University of Houston's Honors College)
For more information or to register, visit: www.hiram.edu/age-ability
Friday, June 13, 2014
Lisa Milot, Ignorance, Harm, and the Regulation of Performance-Enhancing Substances, 5 Harv. J. Sports & Ent. L. 92 (2014).
Eloise Chandler, Anita Stuhmcke, Jenni Millbank, Isabel A. Karpin, Rethinking Consent, Information Giving and Counselling Concerning Stored Embryos in IVF Treatment, 20 J. of L. & Med. 759 (2013).
David Orentlicher, Thaddeus Mason Pope, Ben A. Rich, The Changing Legal Climate for Physician Aid in Dying, 311 J. of the Am. Med. Ass'n 1961 (2014).
A couple weeks ago, the New York Times reported that some hospitals around the country are starting to curb their charity care and financial assistance to uninsured patients who they believe should purchase coverage on the ACA exchanges. This is a troubling trend that threatens to weaken the fragile health care safety net for low- and moderate-income individuals.
The hospitals in the article have taken a range of actions including charging charity care patients a copay or coinsurance for their care or reducing the income threshold for eligibility for financial assistance. The hospitals justify their actions, saying that because the ACA marketplaces and subsidies now make insurance widely available, individuals ought to purchase their own coverage.
There are several problems with this trend. First, cost-sharing doesn’t work for the poor and the chronically ill. Rather than causing these patients to consume the appropriate amount of care or to purchase insurance coverage, even small amounts of cost-sharing may make these individuals avoid needed and cost-saving care. Second, cutting back on charity care is particularly harmful for individuals in states that are not expanding Medicaid, because individuals under 100% of poverty in those states are ineligible for ACA premium subsidies as well as Medicaid. Third, hospitals may be trying use stingy financial assistance policies to push self-pay or uncompensated care patients to the safety net or religious hospitals in the community that already provide a disproportionate share of the uncompensated care, even while disproportionate share payments under Medicare and Medicaid are shrinking.
Thursday, June 12, 2014
A great post by my colleague Diana Winters, cross-posted from Bill of Health
While today’s unanimous (sans Justice Breyer, who recused himself) decision by the Supreme Court in POM Wonderful LLC v. Coca-Cola Co. was certainly not a surprise, especially after the clear tenor of the oral argument, the case may have some implications for FDA law going forward. In this case, POM Wonderful sued Coca-Cola under the Lanham Act, alleging that the label on Coca-Cola’s pomegranate blueberry juice was false and misleading, and that this deception caused it to lose sales. Coca-Cola argued that because its label complied with the Food, Drug, and Cosmetic Act, POM’s Lanham Act claim should be precluded. The district court and the Ninth Circuit agreed.
Wednesday, June 11, 2014
Studies show that pregnant women who use drugs are unlikely to receive adequate prenatal care, and therefore are more likely to have poorer pregnancy outcomes than other pregnant women. Although there may be confounding factors that explain these disparities, the lack of prenatal care definitely limits a woman’s face-to-face interaction with a physician. Such interactions may allow physicians to offer health-promoting interventions to these women, including those that may help these women overcome addiction. One of the reasons that addicted women avoid prenatal care during pregnancy is the (unfortunately well-founded) concern that they may face adverse consequences due to their drug use.
Despite these concerns, Tennessee seems to be proceeding with an controversial new piece of legislation, SB 1391, which will be effective July 1, 2014, that allows for a pregnant mother to be convicted of assault “for the illegal use of a narcotic drug while pregnant, if her child is born addicted to or harmed by the narcotic drug, or for criminal homicide if her child dies as a result of her illegal use of a narcotic drug taken while pregnant.” This law comes after Tennessee had seemingly eased back on the criminalization of expectant mothers in 2013 when it enacted the Safe Harbor Act, incentivizing treatment for prescription drug abusers, opening treatment opportunities for expectant mothers seeking help, and helping to ensure they would not lose custody of their child because of drug abuse. However, this new legislation reinstates criminal penalties.
Tuesday, June 10, 2014
On June 4, 2014, the New York Court of Appeals heard the New York City Board of Health’s appeal of the decision striking down its Portion Cap aka Soda Ban rule. (The choice of name reflects one’s position on the issue.) That rule would prohibit certain businesses from selling “sugary drinks” in containers larger than 16 ounces. (“Sugary drinks” do not include milk products, fruit juices or alcoholic beverages.) The trial court struck down the rule as beyond the Board’s jurisdiction, violating separation of powers,and the Appellate Division unanimously affirmed.
The high court’s decision may not appear until July, but the case highlights issues central to public health regulation today: general grants of administrative authority, expanding definitions of public health, and increasing attention to the role of individual behavior in chronic disease development.
For now, let’s focus on the jurisdictional issue. Let’s begin with the assumption that a legislative body like the New York City Council could enact such a rule. (Whether it would make a significant dent in obesity rates and whether that would save the city money are different questions.) Let’s also assume that the rule’s opponents care far less about the public’s health than about their own revenues. The question before the court was simply whether the Board of Health had the jurisdiction to do what the City Council could – but did not – do. In other words, is the rule the type of action that an administrative body can take or did the Board usurp the City Council’s legislative authority?
Monday, June 9, 2014
Today, the New York Court of Appeals heard arguments on Former Mayor Michael Bloomberg’s 2012 proposed restriction on the sale of large sizes of sugary drinks by certain businesses in New York City. The New York City Department of Health and Mental Hygiene (DOHMH) and Board of Health argued before the Court to reinstate the rule, which would restrict the sale of soda and other sugary beverages larger than 16 ounces. Based on preliminary reports, they may have had a promising audience (at least, based on Chief Judge Jonathan Lippman’s questions). According to the New York Daily News, Lippman described the portion cap as a “relatively modest regulation” and “questioned why it was any different from previous efforts to ban trans fats or add fluoride to water.” Lippman further asked the attorney representing the American Beverage Association and other opponents of the ban, “Put aside the hype about what they are doing, what is so revolutionary?” This is in line with the arguments that the Board of Health and DOHMH made in their brief before the Court of Appeals. They argued that the Board has legislative authority in the area of public health, "which is demonstrated through its previous requirements of fluoridation of city water, posting calorie counts on menus, restricting trans fat use in restaurants, and banning the use of lead paint in residences." Although sometimes referred to as the Big Gulp ban, and the basis of endless fodder for late night television gags, the proposed rule actually did not actually ban any soda and did not apply to convenience stores, grocery stores, corner markets, gas stations and the like. Rather the portion cap rule limits the serving size for “non-diet soft drinks, sweetened coffee and tea, energy and sports drinks, hot chocolate, and sweetened juices, but excludes alcoholic beverages, milkshakes, fruit smoothies, mixed coffee drinks, mochas and lattes, and 100 percent fruit juices."
Sunday, June 8, 2014
Hanneke Verwey, Pieter Carstens, Informed Consent to Cosmetic Surgery – Does a Broader Duty of Disclosure Exist?, 76 J. of Contemp. Roman-Dutch Law 642 (2013).
Isabel A. Karpin, Jenni Millbank, Anita Stuhmcke, Eloise Chandler, Analysing IVF Participant Understanding of, Involvement in, and Control Over Embryo Storage and Destruction in Australia, 20 Journal of Law and Medicine 811 (2013).
Bianca Phillips, Telemedicine: Why the Law Must Change to Promote a Better Healthcare System, 11 Privacy L. Bull. (2014).
Guest Blogger Professor Erin Fuse Brown: IPAB May Be A Super-Independent Agency, But It Is Constitutional
The Ninth Circuit is scheduled to hear oral argument on June 10 in the Coons v. Lew case (9th Cir., No. 13-15324, formerly Coons v. Geithner) challenging the constitutionality of the Independent Payment Advisory Board (IPAB). The plaintiffs allege that Congress’s creation of IPAB violates the separation of powers doctrine.
The District Court upheld IPAB’s constitutionality, concluding without much explanation that Congress provided a sufficiently intelligible principle to survive a nondelegation challenge. On appeal, the plaintiffs argue that in addition to nondelegation, the court should consider a free-floating separation of powers argument that Congress violated the doctrine when it insulated IPAB from judicial review and made IPAB’s decisions and authority unrepealable. However, courts have not recognized such a free-floating separation of powers claim, and as explained below, IPAB and its proposals are repealable. Because they are challenging the degree of authority and discretion given by Congress to IPAB, the plaintiffs’ claim is at base a nondelegation claim, and the Supreme Court has only struck down a delegation of authority as lacking an intelligible principle on only two occasions, neither of which are even close to being comparable to this case. Congress provided a litany of principles to constrain the discretion of IPAB when it formulates its proposals to contain Medicare costs. Even with a conservative panel, it seems unlikely the Ninth Circuit will stretch the nondelegation doctrine so far beyond its narrow scope to invalidate IPAB on these grounds. The separation of powers challenge to IPAB is likely to fail.
HealthLawProf Blog extends a big welcome to the fourth of four guest bloggers for the month of June, Assistant Professor Erin Fuse Brown:
Erin C. Fuse Brown, is an Assistant Professor of Law at Georgia State University College of Law. She teaches Administrative Law; Health Law: Finance & Delivery; and the Health Care Transactional & Regulatory Practicum. She is a faculty member of the Center for Law, Health & Society. Her research interests are in the intersection of the business and regulation of health care delivery systems. Her recent scholarship has focused on policies affecting hospital prices for health care services and on the structural fragility of the right to health care in the Affordable Care Act. Professor Fuse Brown came to GSU from Arizona State University’s Sandra Day O’Connor College of Law, where she was a visiting assistant professor and visiting fellow in ethics and health policy with the Lincoln Center for Applied Ethics. Previously, she practiced in the health care group of the San Francisco office of Ropes & Gray LLP and clerked for Judge Alan C. Kay on the U.S. District Court in the District of Hawaii.
HealthLawProf Blog is honored to welcome the third of four guest bloggers for the month of June, Associate dean and Professor Alicia Ouellette:
Alicia Ouellette, the Associate Dean for Academic Affairs and Professional Life and a Professor of Law at Albany Law School and a Professor of Bioethics in the Union Graduate College/ Mt. Sinai School of Medicine Program in Bioethics. Her research focuses on health law, disability rights, constitutional law, children’s rights, and human reproduction. Her book, Bioethics and Disability: Toward a Disability Conscious Bioethics, was published in 2011 by Cambridge University Press. She has authored numerous articles published in academic journals such as the American Journal of Law and Medicine, the Hastings Center Report, the American Journal of Bioethics, the Hastings Law Journal, the Indiana Law Journal and Oregon Law Review. Following her clerkship with the Hon. Howard A. Levine on New York’s Court of Appeals, she served as an Assistant Solicitor General for the State of New York from 1996 to 2001.
HealthLawProf Blog is excited to welcome the second of four guest bloggers for the month of June, Professor Wendy K. Mariner:
Wendy K. Mariner is the Edward R. Utley Professor of Health Law at Boston University School of Public Health and Professor of Law at Boston University School of Law. She co-directs the Health Law Program at the School of Law and directs the JD-MPH Dual Degree Program at the School of Public Health. Her research and teaching focuses on patient rights, risk regulation, health insurance, the Affordable Care Act, medical privacy, public health, and research with human subjects. She co-authored (with Ken Wing, George Annas & Dan Strouse) the law school casebook Public Health Law, whose second edition will be published in fall 2014. She has degrees from Wellesley College (B.A.), Columbia University School of Law (J.D.), New York University School of Law (LL.M), and Harvard School of Public Health (M.P.H.).
HealthLawProf Blog is very pleased to welcome the first of four guest bloggers for the month of June, Associate Professor Seema Mohapatra:
Seema Mohapatra is Associate Professor of Law at Barry University Dwayne O. Andreas School of Law. She teaches Health Care Law, Bioethics, Torts I and II, and Business Organizations. Her current research focuses on the standard of care and informed consent issues in prenatal genetic testing. She is also working on a project on public health and trust (in the tobacco, food labeling, and vaccination context). Her past work has focused on health disparities between in general and in various contexts such as stem cell donations and new assisted reproductive technology like egg freezing. She also serves as the Deputy Book Review Editor for the Journal of Legal Medicine. She received her Masters in Public Health in Epidemiology at Yale University and her Juris Doctor from Northwestern University School of Law. Her recent research can be found on SSRN.
Wednesday, June 4, 2014
Is “The Right to be Forgotten” a Misnomer? More on the Recent Decision of the European Court of Justice
For blog readers interested in how the "right to be forgotten" is playing out in Europe, I'm providing the following as a further description of the recent decision of the European Court of Justice (ECJ) delightfully discussed in Nic Terry's recent post.
The recent ECJ decision about the so-called “right to be forgotten” has been hailed as highly privacy protective and condemned as “censorship.” It is neither. Rather, it is a decision about the indexing practices of search engines. It concludes that search engines are data processors with independent obligations under European privacy law; that the rights of individuals to privacy and the protection of personal life must be balanced against rights to information; and that if information is inaccurate or irrelevant because of the passage of time, the balance should be struck in favor of protecting the individual. The balance may be different for web sites originally publishing the information--a question not at issue in the ECJ decision. And it may be different for public figures, also not at issue in the ECJ decision.
The actual case, Google Spain SL v. Agencia Espanola de Proteccion de Datos, was initiated with a complaint to the Spanish data protection authority brought by Mr. Costeja González against Google Spain and the newspaper La Vanguardia Ediciones. In 1998, the paper had published notice of a sale of property to satisfy social security debts. The publication was legal—indeed, was legally required as a method to obtain publicity for the sale at auction. Costeja González contended that the proceedings had been fully resolved for many years and that therefore the information about the debt should no longer be publicly available. There were two aspects of this question: whether the newspaper should continue to make the information available on its website and whether search engines should be able to pick up the link to the information from the newspaper web page. The Spanish data protection authority concluded that the newspaper should be able to continue to have the information on its web site, as it was a lawfully published record, but that operators of the search engines against the wishes of the data subject violated the dignity of the person and the fundamental right to data protection. Google sought to block the ruling in Spanish court, and the court referred the questions presented to the ECJ.
The case involved a number of issues about the interpretation of the European Union’s data protection directive, 95/46/EC. These included whether Google Spain was within the jurisdiction of Spain’s data protection authority as an “establishment” (yes) or a “use[r] of equipment” (answer unnecessary), whether search engine location and prioritization of data was “data processing” (yes), and whether an entity performing search engine functions was a “data controller” (yes).
With respect to the right to be forgotten, the initial question was whether responsibilities attached only to the website publishing the information—in this case, the newspaper—or to the search engine as well. Google contended that any questions about removal should be address to the web site, the entity in the best position to determine whether publication of the material was lawful. In addition, Google contended, to require search engines to remove links to lawfully published material would violate the rights of the web site publishers and internet users. Costeja González contended that individuals should be able to approach search engines directly, and that the obligations of the search engine were independent from the obligations of the web site. On this point, the ECJ interpreted Directive 95/46/EC in light of the Charter of Fundamental Rights of the European Union Article 7 right to respect for private life and Article 8 right to the protection of personal data. The ECJ agreed with Costeja González that each data controller had obligations to determine whether its form of processing of the data was permissible under Directive 95/46/EC and the Charter. Determining the legitimacy of processing, the ECJ determined, requires balancing the rights and freedoms of the data subject with the legitimate interests of the data controller; this balance may not be the same for search engines and web page publishers. With respect to search engines, use of algorithms that search by individual name are particularly problematic for the fundamental right to privacy because of the way they permit easy assembly of structured profiles of individuals. The mere economic interests of the search engine cannot override this fundamental right. However, legitimate interests of other internet users in obtaining information about the individual must also be considered and “a fair balance should be struck between [those interests] and the data subject’s fundamental rights.” In the words of the ECJ, “Whilst it is true that the data subject’s rights protected by those articles also override, as a general rule, that interest of internet users, that balance may however depend, in specific cases, on the nature of the information in question and its sensitivity for the data subject’s private life and on the interest of the public in having that information, an interest which may vary, in particular, according to the role played by the data subject in public life.” (¶ 81) In contrast, publication of the information on the web site is both less intrusive and may be legitimate. Web site publication may also come within the exception for journalism in Directive 95/46/EC.
Finally, the ECJ analyzed the scope of the data subject’s rights against search engines. Here, the question was whether the data subject has the right to request search engines to remove links to lawfully published, true information. Costeja González contended that his interest in protecting his privacy from the publication of prejudicial information overrode the interests of the search engine and the general interest in freedom of information. The ECJ determined that under Directive 95/46/EC, information may over time become inadequate or no longer relevant. Such was the case with information about long-resolved old debts for an ordinary individual. In such cases of outmoded information, the data subject should have the right to request limits to its processing. For more public figures, however, the rights to information might override the rights of the data subject. (¶ 97)
Monday, June 2, 2014
The President’s Council of Advisors on Science and Technology (PCAST) has issued a report intended to be a technological complement to the recent White House report on big data. This PCAST report, however, is far more than a technological analysis—although as a description of technological developments it is wonderfully accessible, clear and informative. It also contains policy recommendations of sweeping significance about how technology should be used and developed. PCAST’s recommendations carry the imprimatur of scientific expertise—and lawyers interested in health policy should be alert to the normative approach of PCAST to big data.
Here, in PCAST’s own words, is the basic approach: “In light of the continuing proliferation of ways to collect and use information about people, PCAST recommends that policy focus primarily on whether specific uses of information about people affect privacy adversely. It also recommends that policy focus on outcomes, on the “what” rather than the “how,” to avoid becoming obsolete as technology advances. The policy framework should accelerate the development and commercialization of technologies that can help to contain adverse impacts on privacy, including research into new technological options. By using technology more effectively, the Nation can lead internationally in making the most of big data’s benefits while limiting the concerns it poses for privacy. Finally, PCAST calls for efforts to assure that there is enough talent available with the expertise needed to develop and use big data in a privacy-sensitive way.” In other words: assume the importance of continuing to collect and analyze big data, identify potential harms and fixes on a case-by-case basis possibly after the fact, and enlist the help of the commercial sector to develop profitable privacy technologies.
The report begins with an extremely useful (and particularly frightening if you aren’t familiar with the internet of things) description of big data possibilities, now and in the near-term future. The description emphasizes the distinction between data “born digital”—that is, created in digital form—and data “born analog”—arising from the characteristics of the physical world and then becoming accessible in digital form. Data born analog are highly likely to contain more information than just that of particular digital interest; for example, surveillance cameras record everything that is occurring in a particular location, not just acts that are the target of surveillance. But with analytics that allow data fusion, the combination of data sources may reveal new meanings, for example profiling individuals. Big data are high volume, high velocity, and high variety, an intersection that presents serious privacy challenges.
PCAST then attempts to anticipate the privacy harms that might be associated with big data collection and analysis. The harms are in the main presented as byproducts of the benefits of developments of particular types of technologies. The list is impressive, but may miss additional harms associated with the development of a big data world. Here’s a table listing developments, benefits, and harms; I’ve marked with an asterisk benefits that I’ve reconstructed from what PCAST says but that PCAST does not state explicitly.
Social networking across geographical boundaries; social and political participation on a far larger scale
Shared pipelines and the possibility of interception
Ability to store, organize, and share personal records, e.g. cloud storage of photographs.
“Home as one’s castle” should extent to “castle in the cloud,” not currently protected
Inferred facts about individuals
Delivery of desired or needed services, e.g. targeted marketing
Inferences may be drawn about highly sensitive facts about the individual (e.g. sexual orientation)—facts of which the individual may not even be aware (e.g. early dementia)
Services such as navigation or routes, finding people or services nearby, avoiding hazards
Stalking and tracking
Benefits of use of statistically valid algorithms
False conclusions about individuals may be drawn
Discovery of special cases that apply to individuals within a population
May allow tailoring of services to special cases—e.g. personalized medicine, instruction linked to learning styles*
Foreclosure of autonomy—individuals may not want to take the predicted path
Identification of individuals
May allow individuals to be warned or protected or otherwise benefited*
Loss of desired anonymity
PCAST intentionally omitted from this list desires that information be used fairly and that individuals know what others know about them or are doing with their information. In the view of PCAST, neither of these “harms” can be sufficiently defined to enable policy recommendations. Also omitted from this list are more overarching concerns such as effects on identity, security, stigmatization of groups, freedom of expression, or political liberty.
PCAST’s discussion of the current technologies of privacy protection is highly informative and readers with interests in this area would do well to read the report—I won’t summarize it here. The report also debunks several standard methods for privacy protection: notice and choice (a “fantasy”), de-identification (ineffective in light of the development of analytics enabling re-identification), and non-retention or deletion (hopeless given potential for copying including the creation of multiple copies at the point analog data become digital).
Instead, the report suggests several different approaches for protection against data misuse. As a successor to notice/consent, PCAST recommends the development of “privacy preference profiles,” perhaps by third parties such as the ACLU or Consumer Reports; apps or other internet entities could then indicate whether their privacy policies comport with a profile specified by the consumer. Or, the profile developers might offer the service of vetting apps. Ideally, technologies could be developed to perform the vetting automatically. PCAST also recommends developing use controls associated with data collection, use, and subsequent transmission of data or uses. Metadata might serve this purpose but there is clearly need for further development. Another suggested strategy is audit capability as a deterrent to misuse. Finally, PCAST suggests implementing the Consumer Privacy Bill of Rights through recognition of potential harmful uses of data. Emphasis should be placed on development of best practices to prevent inappropriate data use throughout the data life cycle.
Five major policy approaches (they are called recommendations, but they are far better characterized as general directions rather than specific recommendations) conclude the report. They are:
--attention should focus on uses of big data rather than collection and analysis
--policies should not be stated in terms of technical solutions but in terms of intended outcomes
--the US should strengthen privacy-related research, including relevant social science informing successful application of technologies
--the US Office of Science and Technology Policy should increase education and training efforts
--the US should take international leadership by adopting policies that stimulate the development of privacy protective technologies.
These recommendations seem remarkably anodyne after the detailed discussion of technologies that preceded them. Moreover, they are also preceded by some other, less anodyne policy observations (I found these quite troubling—for reasons I just begin to suggest parenthetically below):
--basing policy on data collection is unlikely to succeed, except in very limited contexts (such as health information) where there may be possibilities for meaningful notice and consent. (Why, I ask, is notice/consent the only way to approach collection practices? What about other sorts of restrictions on collection? Or, is the thought that getting the data is both inevitable and desirable, no matter what the context?)
--regulating at the moment individuals are particularized by analytics might be technically possible—but even so, it’s preferable to focus on harms downstream (Doesn’t this expose people to risks of harm, correctable only after the fact? Shouldn’t we consider building ways to detect and deter re-identification that could intervene before the harm occurs?)
--drafting savvy model legislation on cyber-torts might help improve the current patch-work of liability rules for privacy violations (Why not a public law approach to violations rather than placing the onus on individual litigation?)
--forbidding the government from certain classes of uses might be desirable, even if these uses remain available in the private sector (So is the government the only or even primary problem with big data use???)
Saturday, May 31, 2014
Cross-posted from Bill of Health
Privacy is never easy to think about. This week it became harder. Two pieces framed my week. First, Eben Moglen’s essay in The Guardian (based on his Columbia talks from late last year) took my breath away; glorious writing and stunning breadth combined to deliver a desperately sad (but not entirely hopeless) message about government and corporate overreaching in data collection and processing.
A wry speech posted by software developer Maciej Ceglowski also helped frame my thoughts. He wrote, “The Internet somehow contrives to remember too much and too little at the same time, and it maps poorly on our concepts of how memory should work.” There’s the problem in a nut. Ceglowski alludes to the divide between how human (offline) memory operates (it’s “fuzzy” and “memories tend to fade with time, and we remember only the more salient events”) and the online default of remembering everything. Government and Google and, for that matter, Big Data Brokers tell us that online rules now apply across the board and ‘that’s just peachy’ because we’ll have better national security, better searches, or more relevant advertising. But, that’s backwards.
Offline rules need to apply to online data. Not everything needs to be collected and some memories should degrade or disappear. That’s very hard for our silicon-based masters to comprehend. But, remarkably, just a few weeks ago that was the conclusion of the European Court of Justice. Case C‑131/12 held that unlawful data processing “may result not only from the fact that such data are inaccurate but, in particular, also from the fact that they are inadequate, irrelevant or excessive in relation to the purposes of the processing, that they are not kept up to date, or that they are kept for longer than is necessary unless they are required to be kept for historical, statistical or scientific purposes.”
How would the denizens of online rules comply? This week Google posted a form to deal with erasure requests from EU citizens. Of course, it’s in beta (“Please note that this form is an initial effort”). Maybe making it work will require hiring some people who understand the offline sensibilities. Unfortunately vested interests and as Eric Posnerpointed out in Slate, the First Amendment, likely will conspire to deny such an offline, nuanced, balanced rule in the land of the free.
As momentous thoughts were put to paper and the EU revolution began to operationalize, what did the week bring U.S. data protection and (you thought I’d forgotten?) health privacy? Alas, not very much. The FTC published its report on the data broker industry (or more accurately on nine data brokers). Clearly the brokers subscribe to the online rule—they collect everything. And much of it, as I have argued previously, is health-related. The good news is that the agency took health data threats very seriously; a couple of years ago the attitude would have been—’well, HIPAA takes care of that.’ Not any more. The report specifically recommends, “Congress should … consider imposing important protections for sensitive information, such as certain health information, by requiring that consumer-facing sources obtain consumers’ affirmative express consent before collecting and sharing such information with data brokers.” However, although the FTC’s heart is in the right place, most of the report’s other recommendations are regulation-light, transparency and access—in this company, knives at a gunfight.
Although our offline memories seem fuzzy the more important reality is that we remember based on context and emotions, our context and emotions. Data brokers and the other powerful entities that have fallen under the gaze of Moglen, Ceglowski, and the European Court not only expropriate all our memories, but then they shape them to serve the contexts of others.
Tuesday, May 27, 2014
Guest Blogger Professor John Jacobi: Ensuring Successful ACA Follow-Through Part 3: Undocumented Immigrants
An article on the front page of Memorial Day’s New York Times highlights an emerging health access concern for undocumented persons. Hospitals – one of the few points of entry for undocumented persons to health care – are erecting barriers to care for the poor, on the grounds that the poor should be encouraged to take advantage of the programs and subsidies of the ACA. That advice is hollow for the undocumented, shut out as they are from the ACA’s benefits.
The politics of immigration at the national level drove the exclusion of undocumented persons from coverage under the ACA. As Bradford Gray and Ewout van Ginneken have noted, the United States is not the only country to restrict public funding for undocumented persons. The reasons for European restrictions sound familiar: concerns that available health care is a “magnet” for immigration, and belief that adding new users will strain the health system’s capacity. But they also point to familiar counterarguments: the human rights-based concern for the wellbeing of undocumented men, women, and children, and the pragmatic concern for sound public health measures.
In my first guest post I noted that there are many important tasks that can improve ACA implementation, and that can be accomplished by states and private actors, and without a change in federal law. Improvement of health care access for undocumented persons may be a peculiarly non-federal issue for the foreseeable future.
As the UCLA Center for Health Policy Research described in detail, undocumented persons are excluded from most of the coverage available in the ACA. The ACA left in place most exclusions from Medicaid and CHIP (except for emergency care), and excluded the undocumented from premium subsides for private coverage. The mean-spirited topper is the prohibition against undocumented persons purchasing on an exchange – even at full price.