The Faculty Lounge

The Law School Industry - Law and Technology @ US Law Schools

Digital technologies are an increasingly important phenomena in higher education and professional industries. Law schools have started to participate in rethinking how to train the next generation workforce/citizens at the interface of governance/technology. This post includes links to quantitative data for folks interested to learn more about the current law/tech situation in US legal higher education, and provides a few initial thoughts about the data. 

Here is an excel sheet formatted study with a wide range of data on current US law school efforts around 'Law and Technology': Download US Law and Technology Higher Education Law Schools - Haskell:Fish In addition, for an alternative visualisation for some of the information, see: https://app.flourish.studio/visualisation/2736840 

Note: The study was developed along with a PhD student, Jessica L. Fish, and funded by the University of Manchester Law School and its Law and Technology Initiative. Scholarship based partly on this data will be rolled out in the coming year, but the information provided is meant to be open sources/common for any colleagues however useful. 

A Few Thoughts... (see below)

It’s Not Just Football

If recent history is any guide, the National Football League’s AFC and NFC championship games on Sunday afternoon will be viewed by over 60 million people. Viewership for the Super Bowl on February 3 will likely exceed 100 million. When combined with gate receipts and merchandising, the television viewership translates to massive revenues for NFL owners. In 2017 alone the NFL generated $14 billion in revenue, the most of any professional sports league in North America.

But no one can confidently predict what football’s long-term future holds. Yesterday ESPN’s website posted a fascinating and important piece on the disappearing insurance market for football. The article, which is titled For the NFL and all of football, a new threat, is authored by Steve Fainaru and Mark Fainaru-Wada. In 2014 they wrote the book League of Denial: The NFL, Concussions, and the Battle for Truth, which detailed the NFL’s unconscionable campaign to conceal the scale and gravity of the health threat posed by sports-related concussions.  

The ESPN article explains how the rising tide of concussion-related lawsuits has driven insurers to flee the football marketplace. As Fainaru and Fainaru-Wada explain:

Fellowship Opportunity: The Petrie-Flom Center and Edmond J. Safra Center for Ethics Fellow-in-Residence

Another announcement from our friends at Petrie-Flom

Each year the Edmond J. Safra Center for Ethics hosts several fellows-in-residence.  For 2019-20, they are concentrating their fellowships on the Ethics of Technological and Biomedical Innovation.  One of these will be a joint fellowship with the Petrie-Flom Center for a legal scholar interested in this topic.  We welcome applicants who are eager to work at the intersection of the law, bioethics, and biomedical innovation and pursue their independent research while taking advantage of the resources both Centers have to offer

For more information, please visit the Safra Center website.  Applications are due November 15, 2018.  Scholars interested in the joint fellowship should hold a JD (or an equivalent legal degree from their home country) and be in the early years of a tenure track position.  Scholars who do not have a legal background may apply for the other fellows-in-residence positions available through the Safra Center.  This will be a one year fellowship.

Call for Abstracts: Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies

An announcement from our friends at Harvard Law's Petrie-Flom Center

Conference date: May 17, 2019

Abstract Submissions Due: October 15, 2018

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2019 annual conference: “Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies.” This year’s conference is organized in collaboration with Nita A. Farahany, Duke Law School, and Henry T. Greely, Stanford Law School.

Conference Description: Breakthroughs in genetics have often raised complex ethical and legal questions. Many regard their genetic testing and sequencing as revealing something intensely personal and private. The questions raised by these technologies loom even larger as genetic testing is becoming more commonplace, affordable, and comprehensive. At the same time, advances in CRISPR and other related technologies raise anxieties about the implications of editing our own DNA. One can imagine a future when gene editing may become as widespread as genetic testing is today. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing. This conference will examine some of these issues.

The rise of genetic testing has allowed individuals to gain new insights into their unique makeup. Already the global genetic testing and consumer/wellness genomics market was valued at $2.24 billion in 2015 and is expected to double by 2025. Amazon noted that Ancestry.com’s DNA test kit was one of their best-selling products on cyber Monday of 2018. The availability of these technologies inspires patients to act proactively to avoid medical conditions, such as when actress Angelina Jolie pursued a double mastectomy after genetic testing revealed that she was in the highest risk category for developing breast and ovarian cancers. The rise of direct-to-consumer genetic testing kits raises questions about the appropriate setting for these activities, however. For example, the Food and Drug Administration expressed concern about 23 and Me’s initial product offering, noting that delivering health-related results directly to consumers might cause these individuals to draw the wrong medical conclusions.

The increased ease of genetic testing and sequencing has also led to a sharp increase in genetic data and the rise of precision medicine. The rise of genetic databases raises significant ethical questions, especially around privacy concerns. In an age where serial killers are caught because their relatives chose to submit DNA to a consumer genealogy database, is genetic privacy for individuals possible? The economics here are significant. Consider the increased value of Myriad’s database of variances of unknown significance after the Supreme Court in Association for Molecular Pathology v. Myriad Genetics held that isolated genes cannot be patented. Does the aggregation of data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate already significant health care disparities?

While gene editing tools such as CRISPR are not yet as widely available as genetic testing technology, in some parts of the world their availability is already spreading. There have been reports that Chinese scientists have used CRISPR-Cas9 technology to genetically engineer the cells of at least 86 patients. Companies in the United States and Europe are expected to begin treating patients with CRISPR-based therapies this year. Many countries have drawn a line against germline modification, but this prohibition may be strained if gene editing technology is widely disseminated. Before we reach that point, this is the time to consider what ethical and regulatory safeguards should be implemented for when the time comes.

The full call for abstracts and registration information are available here.

CRISPR in Agriculture: An overview of the gene-edited food that probably isn't a GMO

On Monday of this week, TIME announced its 2016 Person of the Year shortlist. Many of the names were unsurprising: Donald Trump, Hillary Clinton, Simone Biles, and Beyoncé Knowles all seem to make sense. One entry in particular, however, seemed like a bit of an outlier -- the CRISPR Scientists. As outlined in TIME's announcement: 

These scientists have developed a groundbreaking new technology that can edit DNA, a technique that has the potential to transform science and the human experience, as it could be used to find and remove mutations responsible for incurable diseases.

I've been following this technology for a little while, so when the announcement was released, I immediately wondered how it would impact everything else happening in the food law arena right now and in the future.

CRISPR, the shorthand reference for "clustered regularly interspaced short palindromic repeats" (pronounced crisper), has been touted as a technology that has the potential to quite literally change the world. Scientists believe it can be used for everything from potentially curing cancer, to saving the lives of children who are allergic to vaccinations, to de-extinction of the wooly mammoth.

The Future of Health Law and Policy: Petrie-Flom Center 10th Anniversary Conference

On March 29, current affiliates and alums (including myself) of Harvard Law's Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics will converge on Cambridge for a day-long conference to discuss current and future directions in these areas. The conference features panels on Health Care Coverage, Costs, and Fragmentation; Law and Bioethics; Health Innovation Policy and Regulating Novel Technology; and Empirical Health Law, as well as a keynote address by Health Affairs Editor-in-Chief Alan Weil. The event is free and open to the public, but seating is limited and registration is required. Hope to see some TFL readers there.

How Should We Think About Whether To Donate Our Leftover, Non-Identified Tissue to Research?

Proposed changes to the federal Common Rule that governs most human subjects research would ask patients for the first time to decide whether to allow their non-identified, leftover tissue to be used for research or thrown away. For that choice to be meaningful, the public needs to be aware of the nature, risks, and benefits of biospecimens research, and of what the proposed changes will—and will not—do. In my latest Forbes essay, "No, Donating Your Leftover Tissue To Research Is Not Like Letting Someone Rifle Through Your Phone," I consider the power of analogies and other reflections on a recent New York Times op-ed on these proposed changes by Rebecca Skloot, author of The Immortal Life of Henrietta Lacks.

Common Rule NPRM Finally Out (& the Ethics of Cause Lawyers Advising Clients to Disobey Preliminary Injunctions)

I'd begun a blog post about claims (see Mark Joseph Stern in Slate and Howard Wasserman at Prawfs) that the cause lawyers representing Rowan County, KY County Clerk Kim Davis acted unethically by "advis[ing] her," according to Stern, to disobey a court order preliminarily enjoining her practice of allowing her office to issue no marriage licenses to either same-sex or opposite-sex couples, thereby putting her at (considerable) risk of contempt (that show cause hearing, in which the ACLU has requested fines but not jail time, is scheduled for tomorrow). My quick and dirty take is that unless one is prepared to say that disobeying a preliminary injunction and accepting one's lumps in the form of fines and/or jail time is itself per se wrong and outside the bounds of legal ethics, such that advising a client to defy an injunction is no different than advising them to, say, lie on the stand (which doesn't seem to be the view that either Stern or Wasserman takes), then I tend to think that the legal and other risks (financial, emotional, reputational, etc.) of this strategy compared to her alternatives is something that should be subject to (to draw an analogy to medical ethics) shared decision-making between professional and client.

A cause lawyer should, of course, bend over backwards to ensure that her client understands all of her options and the likely consequences of each, especially when presenting options that align with the lawyer's cause and/or pocketbook. (I can't tell from Stern's bare assertion that Liberty Counsel "advised her to disobey the ruling" whether such a conversation took place or not.) But it's not obvious to me that including disobey-and-risk-the consequences among those alternatives is per se unethical. Indeed, one could make the case that deliberately withholding that possibility from the client out of concern that it is "too risky" is itself unethical in its paternalism. Nor was it unethical of the ACLU cause lawyers representing the couples in this suit to "advise them" to continue to litigate in order to establish a legal precedent that will mostly benefit others (and give the ACLU a very public win), despite the fact that the couples could instead drive 30 minutes to an adjacent county and start married life significantly sooner—provided that the plaintiffs were adequately informed of their options.

Yes, plaintiffs' sacrifice in this case is much more likely to be rewarded by a legal victory than is the defendant's, but legal (and medical) outcomes are not laypersons' only or necessarily most important measures of success, even if that is what lawyers (and doctors) tend to focus on. Some patients can and do reasonably value their ability to converse with lucidity over their ability to be free from pain, their ability to die a death they deem dignified over additional days, weeks, or even months of life, and so on. Who is the professional to say that a fine of $X, jail time of Y days, or a delay in legally recognized marriage (with its attendant benefits) of Z weeks or months is "too risky" or "not worth" the anticipated benefits, whether medical/legal or otherwise? These trade-offs, after all, are not primarily or ultimately professional judgments, even though professional expertise appropriately feeds into them. Or so I've previously argued in the context of cause lawyering.

But that will have to be my only comment on that topic, because after more than four years, sixteen federal agencies and departments have finally released their Notice of Proposed Rulemaking, suggesting numerous and significant changes to the Common Rule (the federal regulations that govern IRBs and much human subjects research).

It is 519 pages long.

I hope to have some quick thoughts at some point relatively soon. In the meantime, here is the tl;dr version of the NPRM, highlighting its major proposed changes (this also appears at pp. 21-26 of the NPRM):

The One Where Joe Miller Eats a Dog Biscuit

That would be Episode 72 of the always interesting, frequently zany Oral Argument podcast, in which I join Joe Miller and Christian Turner to talk about the Dallas Cowboys, the new Star Wars movie and, eventually (starting at around the 23-minute mark), the Facebook mood contagion experiment and whether Facebook should be regulated like a utility or a burrito stand. And yes, Joe does actually eat a dog biscuit during the show. One of the ones pictured here, in fact. Joe reports that, inexplicably, the peanut butter treats taste like chicken.

Interpreting Fiorina's Comments on Vaccination Law

I've started writing for Forbes as a regular contributor. My first piece, Carly Fiorina Says Her Views On Vaccines Are Unremarkable; For Better Or Worse, She's Right, analyzes GOP presidential candidate Carly Fiorina's recent ad hoc remarks on the relative rights of parents and schools with respect to vaccinations and to some of the hyperbolic reactions to those remarks. Fiorina's remarks are ambiguous, in ways that I discuss. But, as the title of the article suggests, and for better or worse, I think that the best interpretation of them places her stance squarely in the mainstream of current U.S. vaccination law. I end with a call for minimally charitable interpretations of others' views, especially on contentious issues like vaccination.

More on the A/B Illusion: IRB Review, Debriefing, Power Asymmetries & A Challenge for Critics

Here are a few clarifications and further thoughts arising out of my co-written Sunday NYT op-ed based on my forthcoming law review article (here, I speak only for myself, and not for my op-ed co-author).

First, as is usually the case with op-eds, we didn’t write, or even have any advance notice of, the headline. It’s easy to see why the Times chose it, as it’s clickbaity, but “Corporations, Please, Experiment On Us. You don’t even need our consent” is not very reflective of the nuances of our position. Now on to some of those nuances.

A Clarification About the Op-Ed’s Position on IRB Review and Debriefing

On Twitter, James Grimmelmann worries that New York Times readers will interpret one part of the op-ed, as he did, to be making a problematic claim. In the piece, we ask readers to imagine a hypothetical CEO who worries that some of her employees aren't taking optimal advantage of the company's generous 401(k) matching program. She has a hunch that adding to the usual matching letter information telling each employee what his or her similarly-aged peers are saving would nudge the low-savers to save more. We explain that the CEO could implement this peer information letter policy in the next enrollment cycle and observe the result, but that, regardless of whether savings went up or down, she'd never really know what effect, if any, the policy had without running a randomized, controlled experiment in which half the employees receive letters with no peer information and half receive letters with peer information. We also explain that telling employees in advance about that the company would be sending out different letters and why would badly bias the results by altering employees’ behavior. We then explain that our hypothetical CEO isn’t so hypothetical:

Economists do help corporations run such experiments, but many managers chafe at debriefing their employees afterward, fearing that they will be outraged that they were experimented on without their consent. A company’s unwillingness to debrief, in turn, can be a deal-breaker for the ethics boards that authorize research. So those C.E.O.s do what powerful people usually do: Pick the policy that their intuition tells them will work best, and apply it to everyone.

It is this paragraph that has James worried:

Your argument appears to run: (1) people will be outraged about being experimented on if they're debriefed; (2) managers "chafe" at de-briefing because of the outrage, (3) IRBs would require debriefing; so (4) it’s reasonable for companies not to go through IRBs at all [and to conduct the nonconsensual A/B test of 401(k) letters with no debriefing afterward].

(The above is three tweets strung together but otherwise verbatim; the bits in brackets are my words, but I think they fairly reflect James’s other tweets and the logic of his argument. I trust he’ll tell me if I’m wrong.)

To be clear: No, this is not the position we intended to take in the op-ed. I thank James for bringing this possible misreading to my attention so that I can correct it here, at least. More after the jump.

New York Times Op-Ed on the A/B Illusion

I have an op-ed with Christopher Chabris that will appear in this Sunday's New York Times on one theme in my recent law review article on corporate experimentation. Despite the rather provocative headline that the Times gave it, our basic argument, made as clearly as we could in 800 words, is this: sometimes, it is more ethical to conduct a nonconsensual A/B experiment than to simply go with one's intuition and impose A on everyone. Our contrary tendency to see experiments—but not untested innovations foisted on us by powerful people—as involving risk, uncertainty, and power asymmetries is what I call the A/B illusion in my article. Here is how the op-ed begins:

Can it ever be ethical for companies or governments to experiment on their employees, customers or citizens without their consent?

The conventional answer — of course not! — animated public outrage last year after Facebook published a study in which it manipulated how much emotional content more than half a million of its users saw. Similar indignation followed the revelation by the dating site OkCupid that, as an experiment, it briefly told some pairs of users that they were good matches when its algorithm had predicted otherwise.

But this outrage is misguided. Indeed, we believe that it is based on a kind of moral illusion.

The Ethics of Punking the Diet-Research Media Complex (and Millions of Readers)

A remarkable new “sting” of the "diet research-media complex" was just revealed. It tells us little we didn’t already know and has potentially caused a fair amount of damage, spread across millions of people. It does, however, offer an opportunity to explore the importance of prospective group review of non-consensual human subjects research—and the limits of IRBs applying the Common Rule in serving that function in contexts like this.

Journalist John Bohannon, two German reporters, a doctor and a statistician recruited 16 German subjects through Facebook into a three-week randomized controlled trial of diet and weight loss. One-third were told to follow a low-carb diet, one-third were told to cut carbs but add 1.5 ounces of dark chocolate (about 230 calories) per day, and one-third served as control subjects and were told to make no changes to their current diet. They were all given questionnaires and blood tests in advance to ensure they didn't have diabetes, eating disorders, or other conditions that would make the study dangerous for them, and these tests were repeated after the study. They were each paid 150 Euros (~$163) for their trouble.

But it turns out that Bohannon, the good doctor (who had written a book about dietary pseudoscience), and their colleagues were not at all interested in studying diet. Instead, they wanted to show how easy it is for bad science to be published and reported by the media. The design of the diet trial was deliberately poor. It involved only a handful of subjects, had a poor balance of age and of men and women, and so on. But, through the magic of p-hacking, they managed several statistically significant results: eating chocolate accelerates weight loss and leads to healthier cholesterol levels and increased well-being.

They wrote up the results, submitted the manuscript to twenty predatory journals known to publish basically anything for a price, picked one of the “multiple” ones that accepted it, and wrote a check. (The journal that published the paper now says it did so “by mistake” and has removed it from its website, but you can read it here.) Then they cooked up a press release, sent it out to numerous journalists and media outlets, and waited. Several (of various quality, focus, and circulation) took the bait and passed on to their readers the good news that adding chocolate to a "strict" low-carb diet would "accelerate weight loss." As Bohannon brags:

It made the front page of Bild, Europe’s largest daily newspaper, just beneath their update about the Germanwings crash. From there, it ricocheted around the internet and beyond, making news in more than 20 countries and half a dozen languages. It was discussed on television news shows. It appeared in glossy print, most recently in the June issue of Shape magazine (“Why You Must Eat Chocolate Daily”, page 128).

Then, yesterday, Bohannon exposed his own “con” in io9, an online science and technology magazine, under a headline that blared: I Fooled Millions Into Thinking Chocolate Helps Weight Loss.

Was the sting ethical?

Two Cheers for Corporate Experimentation

I have a new law review article out, Two Cheers for Corporate Experimentation: The A/B Illusion and the Virtues of Data-Driven Innovation, arising out of last year's terrific Silicon Flatirons annual tech/privacy conference at Colorado Law, the theme of which was "When Companies Study Their Customers."

This article builds on, but goes well beyond, my prior work on the Facebook experiment in Wired (mostly a wonky regulatory explainer of the Common Rule and OHRP engagement guidance as applied to the Facebook-Cornell experiment, albeit with hints of things to come in later work) and Nature (a brief mostly-defense of the ethics of the experiment co-authored with 5 ethicists and signed by an additional 28, which was necessarily limited in breadth and depth by both space constraints and the need to achieve overlapping consensus).

Although I once again turn to the Facebook experiment as a case study (and also to new discussions of the OkCupid matching algorithm experiment and of 401(k) experiments), the new article aims at answering a much broader question than whether any particular experiment was legal or ethical. Here is how the abstract begins:

“Practitioners”—whether business managers, lawmakers, clinicians, or other actors—are constantly innovating, in the broad sense of introducing new products, services, policies, or practices. In some cases (e.g., new drugs and medical devices), we’ve decided that the risks of such innovations require that they be carefully introduced into small populations, and their safety and efficacy measured, before they’re introduced into the general population. But for the vast majority of innovations, ex ante regulation requiring evidence of safety and efficacy neither does—nor feasibly could—exist. In these cases, how should practitioners responsibly innovate?

My short answer to this question is that responsible innovators should inculcate a culture of continuous testing of their products, services, policies, and practices, and that it is a kind of moral-cognitive mistake (which I dub the "A/B illusion") for the rest of us to respond to these laudable (and sometimes morally obligatory) experimental efforts by viewing it as more morally suspicious for innovators to randomize users to one of two (or more) conditions than to simply roll out one of those conditions, untested, for everybody. The long answer, of course, is in the article. (The full abstract, incidentally, explains the relevance of the image that accompanies this post.)

Thanks to Paul Ohm and conference co-sponsor Ryan Calo for inviting me to participate, to the editors of the Colorado Technology Law Journal, and to James Grimmelmann for being a worthy interlocutor over the past almost-year and for generously unfailingly tweeting my work on Facebook despite our sometimes divergent perspectives. James's contribution to the symposium issue is here; I don't know how many other conference participants chose to write, but issue 13.2 will appear fully online here at some point.

If you would rather hear, than read, me drone on about the Facebook and OkCupid experiments (and some other recent digital research, including Apple's ResearchKit and the University of Michigan's Facebook app-based GWAS, "Genes for Good," as well as learning healthcare systems and the future of human subjects research) you may do so by listening to episode 9 of Nic Terry's and Frank Pasquale terrific new weekly podcast, This Week in Health Law.

Call for Abstracts: Constitutional Challenges to the Regulation of Food, Drugs, Medical Devices, Cosmetics, and Tobacco Products

At the request of the organizers, I'm passing on the following:

The Food and Drug Law Journal is pleased to announce a forthcoming symposium—Constitutional Challenges to the Regulation of Food, Drugs, Medical Devices, Cosmetics, and Tobacco Products—to be held at the Georgetown University Law Center (GULC) on Friday, October 30, 2015, and co-sponsored by the Food and Drug Law Institute and GULC's O’Neill Institute for National and Global Health Law.

The deadline for submitting abstracts is June 1, 2015. Download more information about the symposium here.

Bioethx Chat on Reverse Transplant Tourism Tonight

Those of you on twitter should feel free to join me tonight as I host a Bioethx chat on Reverse Transplant Tourism. Given that I am a twitter moron, still don't understand hashtags, and find it hard to even understand much tweet shorthand, this could be fun.  

Will the Real Evidence-Based Ebola Policy Please Stand Up? Seven Takeaways From Maine DHHS v. Hickox

UPDATES (11/9/14): NPR reports that Hickox's boyfriend  has withdrawn from nursing school and that the two will move out of the state after Nov. 10. Alas, in so reporting, NPR claims that Maine had "sought a court order to require [Hickox] to stay indoors." Apparently NPR doesn't read TFL (or court petitions). Meanwhile, I found this recent JAMA news report about what we do and don't know about Ebola enlightening. Both links via Ross Silverman on Twitter (@phlu). Finally, thanks to Christian Turner for plugging the post on the latest episode of the always interesting Oral Argument podcast.

The case I mentioned in my last post, Maine Department of Health and Human Services v. Kaci Hickox is no more. Hickox and public health officials agreed to stipulate to a final court order imposing on Hickox the terms that the court had imposed on her in an earlier, temporary order. Until Nov. 10, when the 21-day incubation period for Ebola ends, Hickox will submit to "direct active monitoring" and coordinate her travel with Maine public health authorities to ensure that such monitoring occurs uninterrupted. She has since said that she will not venture into town or other public places, although she is free to do so.

Below is a detailed account of the case, which suggests the following lessons:

1. As Hickox herself described it, the result of her case is a “compromise,” reflecting neither what Hickox nor what Maine initially wanted.
2. That compromise was achieved by the parties availing themselves of the legal process, not through Hickox’s civil disobedience.
3. The compromise is not easily described, as it has been, as a victory of science-based federal policy over fear-based state demagoguery. By the time the parties got to court, and perhaps even before then, what Maine requested was consistent with U.S. CDC Guidance, albeit a strict application of it. What Hickox had initially offered to do, by contrast, fell below even the most relaxed application of those guidelines, although by the time the parties reached court, she had agreed to comply with that minimum.
4. The compromise applies only to Hickox, and was based on a stipulation by the parties to agree to the terms that the court had temporarily imposed after reviewing a limited evidentiary record. Additional evidence and legal arguments that the state might have raised in the now-cancelled two-day hearing could have resulted in a different outcome.
5. A substantially different outcome, however, would have been unlikely under Maine’s public health statute. Indeed, it is not clear that Maine’s public health statute allows public health authorities to compel asymptomatic people at-risk of developing Ebola to do anything, including comply with minimum CDC recommendations.
6. “Quarantine” is a charged, but ambiguous, term. It allows us to talk past one another, to shorthand and needlessly politicize a much-needed debate about appropriate policy, and to miss the fact that the CDC Guidance in some cases recommends what could be fairly described as a "quarantine" for people like Hickox and requires it for asymptomatic people with stronger exposure to Ebola (but who are still probably less likely to get sick than not).
7. It’s not clear who has bragging rights to Ebola policy "grounded in science," or what that policy looks like.

Above the (Public Health) Law: Healthcare Worker Deception & Disobedience in a Time of Distrust

Addendum and updates (latest: 4 pm, 10/31) added below

 

A physician shall . . . be honest in all professional interactions, and strive to report physicians . . . engaging in fraud or deception, to appropriate entities.

 

—AMA Principles of Medical Ethics

 

 

This is a troubling series of news reports about deception and defiance on the part of some healthcare workers (HCWs) in response to what they believe to be unscientific, unfair, and unconstitutional public health measures:

(1) Ebola Aide Doc: I'm Not Telling My Team To Tell The Truth

Gavin Macgregor-Skinner, an epidemiologist and Global Projects Manager for the Elizabeth R. Griffin Foundation, who has led teams of doctors to treat Ebola in West Africa, reported that he "can't tell them [his doctors] to tell the truth [to U.S. officials]" on Monday's "CNN Newsroom."

“At the moment these people are so valuable . . . I have to ensure they come back here, they get the rest needed. I can't tell them to tell the truth at the moment because we're seeing so much irrational behavior,” he stated. “I've come back numerous times between the U.S. and West Africa. If I come back now and say ‘I've been in contact with Ebola patients,’ I'm going to be locked in my house for 21 days,” Macgregor-Skinner said as his reason for not being truthful with officials, he added, “when I'm back here in the US, I am visiting US hospitals everyday helping them get prepared for Ebola. You take me out for three weeks, who’s going to replace me and help now US hospitals get ready? Those gaps can't be filled.” 

He argued that teams of doctors and nurses could be trusted with the responsibility of monitoring themselves, stating, “When I bring my team back we are talking each day on video conferencing, FaceTime, Skype, text messaging, supporting each other. As soon as I feel sick I’m going to stay at home and call for help, but I’m not going to go to a Redskins game here in Washington D.C. That's irresponsible, but I need to get back to these hospitals and help them be prepared.

UPDATE: Here is the CNN video of his remarks.

(2) Ebola Doctor 'Lied' About NYC Travels

The city’s first Ebola patient initially lied to authorities about his travels around the city following his return from treating disease victims in Africa, law-enforcement sources said. Dr. Craig Spencer at first told officials that he isolated himself in his Harlem apartment — and didn’t admit he rode the subways, dined out and went bowling until cops looked at his MetroCard the sources said. “He told the authorities that he self-quarantined. Detectives then reviewed his credit-card statement and MetroCard and found that he went over here, over there, up and down and all around,” a source said. Spencer finally ’fessed up when a cop “got on the phone and had to relay questions to him through the Health Department,” a source said. Officials then retraced Spencer’s steps, which included dining at The Meatball Shop in Greenwich Village and bowling at The Gutter in Brooklyn.

 

UPDATE 11PM, 10/30: A spokesperson for the NYC healh department has now disputed the above story, which cites anonymous police officer sources, in a statement provided to CNBC. The spokesperson said: "Dr. Spencer cooperated fully with the Health Department to establish a timeline of his movements in the days following his return to New York from Guinea, providing his MetroCard, credit cards and cellphone." . . . When CNBC asked again if Spencer had at first lied to authorities or otherwise mislead them about his movements in the city, Lewin replied: "Please refer to the statement I just sent. As this states, Dr. Spencer cooperated fully with the Health Department."

(3) Ebola nurse in Maine rejects home quarantine rules [the WaPo headline better captures the gist: After fight with Chris Christie, nurse Kaci Hickox will defy Ebola quarantine in Maine]

Kaci Hickox, the Ebola nurse who was forcibly held in an isolation tent in New Jersey for three days, says she will not obey instructions to remain at home in Maine for 21 days. "I don't plan on sticking to the guidelines," Hickox tells TODAY's Matt Lauer. "I am not going to sit around and be bullied by politicians and forced to stay in my home when I am not a risk to the American public."

Maine health officials have said they expect her to agree to be quarantined at her home for a 21-day period. The Bangor Daily News reports. But Hickox, who agreed to stay home for two days, tells TODAY she will pursue legal action if Maine forces her into continued isolation. "If the restrictions placed on me by the state of Maine are not lifted by Thursday morning, I will go to court to fight for my freedom," she says.

On the evolving Hickox situation, it's unclear whether — as Hickox herself has suggested — she is already under a mandatory home quarantine order, which she is threatening to defy by leaving her house on Thursday morning and (unless it's been lifted) suing, or whether — as her attorneys say — she is currently under no such quarantine order and is free to leave her house at any time (but is choosing to rest for a couple of days). In any case, Maine has clearly said that it is prepared to get a court order to enforce (or impose) a quarantine order.

 

More after the jump...

 

Facebook Rumored To Be Planning Foray Into the Online Health Space

Image: Flikr

I know, I know. You're tired of hearing me drone on about Facebook. I'm tired of hearing me talk about Facebook, too. But this is actually a different Facebook controversy.

Reuters broke the story on Friday, citing anonymous sources:

The company is exploring creating online "support communities" that would connect Facebook users suffering from various ailments. . . . Recently, Facebook executives have come to realize that healthcare might work as a tool to increase engagement with the site. One catalyst: the unexpected success of Facebook's "organ-donor status initiative," introduced in 2012. The day that Facebook altered profile pages to allow members to specify their organ donor-status, 13,054 people registered to be organ donors online in the United States, a 21 fold increase over the daily average of 616 registrations . . . . Separately, Facebook product teams noticed that people with chronic ailments such as diabetes would search the social networking site for advice, said one former Facebook insider. In addition, the proliferation of patient networks such as PatientsLikeMe demonstrate that people are increasingly comfortable sharing symptoms and treatment experiences online. . . . Facebook may already have a few ideas to alleviate privacy concerns around its health initiatives. The company is considering rolling out its first health application quietly and under a different name, a source said.

I'm quoted in this International Business Times article about Facebook's rumored plans. What follows is the full statement I provided to the reporter (links added). (I love it when a journalist will let me email my thoughts to him or her; I can better control what I say and after they use one or two sentences, the rest becomes an instant blog post.)

It's hard to comment too much, since the details are at this point so vague. But here are some thoughts. There's nothing inherently wrong with creating free online fora centered around particular medical conditions, including very serious ones, inviting patients suffering from those conditions to share their experiences with each other, and conducting research on and even selling that data to third parties. That's exactly the model that PatientsLikeMe uses. That patient network was created by the brothers and friend of a man with ALS and it has proved critical for many patients suffering from some 1500 diseases and critical for science. The Personal Genome Project, begun by Harvard geneticist George Church and now with additional university sites in Canada and the UK, is similar. [Disclosure: I'm a PGP research subject through which I have published by whole genome sequence and sensitive medical data online. I have not identified my PGP profile by name, although genomic data is inherently re-identifiable and PGP subjects were the target of a pair of re-identification attacks by privacy scholars last year. I'm also a member of the board of directors of PersonalGenomes.org, the nonprofit created to support the PGP and similar initiatives.]

Openly sharing such sensitive information online is the last thing many people would want to do, and it's not for everybody. But there are lots of reasons why many benefit from such fora. Connecting with others who share and can understand your experience can be psychologically critical, and for some ill people, such as those with limited mobility or rare conditions, an online forum may be the only feasible way of achieving this benefit. Such online fora needn't be open to researchers and others, but again, many patients prefer to openly share their experiences. Privacy can be important, but secrecy can also take a toll, especially for those with stigmatized conditions. Sharing patient data as widely as possible is the best way to accelerate research into those conditions, and many patients feel that playing even a modest role in accelerating research is empowering.

Notwithstanding the benefits for many patients, and for science, of data sharing, people have very different preferences about sharing their personal information. It's essential that Facebook — like PatientsLikeMe and the PGP — be absolutely transparent about who will have access to the data users provide (just other forum members? a user's entire Facebook network? third parties to whom Facebook sells the data? everyone with an Internet connection?), how user data will be used (to conduct research? to target ads to patients?), and whether users will be identified with their data (will they be permitted to post anonymously or pseudonymously, and if so, will Facebook ever attempt to re-identify users and how will it react if third parties attempt to do so?). Facebook should also be very clear about the risks of sharing potentially identifying data online and of following any medical advice offered by fellow users.

If true, it's troubling that Facebook is considering initially launching its health application under a different name, presumably in order to conceal its connection to Facebook and what many view as its checkered history of privacy practices. Individuals have the right to decide how open they want to be with their personal information, and they also have the right to decide for themselves whether Facebook can be trusted to stick to whatever terms it offers the users of its health application.

Facebook Announces New Research Policies

A WSJ reporter just tipped me off to this news release by Facebook regarding the changes it has made in its research practices in response to public outrage about its emotional contagion experiment, published in PNAS. I had a brief window of time in which to respond with my comments, so these are rushed and a first reaction, but for what they're worth, here's what I told her (plus links and less a couple of typos):

There’s a lot to like in this announcement. I’m delighted that, despite the backlash it received, Facebook will continue to publish at least some of their research in peer-reviewed journals and to post reprints of that research on their website, where everyone can benefit from it. It’s also encouraging that the company acknowledges the importance of user trust and that it has expressed a commitment to better communicate its research goals and results.

As for Facebook’s promise to subject future research to more extensive review by a wider and more senior group of people within the company, with an enhanced review process for research that concerns, say, minors or sensitive topics, it’s impossible to assess whether this is ethically good or bad without knowing a lot more about both the people who comprise the panel and their review process (including but not limited to Facebook's policy on when, if ever, the default requirements of informed consent may be modified or waived). It’s tempting to conclude that more review is always better. But research ethics committees (IRBs) can and do make mistakes in both directions – by approving research that should not have gone forward and by unreasonably thwarting important research. Do Facebook’s law, privacy, and policy people have any training in research ethics? Is there any sort of appeal process for Facebook’s data scientists if the panel arbitrarily rejects their proposal? These are the tip of the iceberg of challenges that the academic IRBs continue to face, and I fear that we are unthinkingly exporting an unhealthy system into the corporate world. Discussion is just beginning among academic scientists, corporate data scientists, and ethicists about the ethics of mass-scale digital experimentation (see, ahem, here and here). It’s theoretically possible, but unlikely, that in its new, but unclear, guidelines and review process Facebook has struck the optimal balance among the competing values and interests that this work involves.

Most alarming is Facebook’s suggestion that it retreat from experimental methods in favor of what are often second-best methods resorted to only when randomized, controlled studies are impossible. Academics, including those Facebook’s statement references in its announcement, often have to resort to non-experimental methods in studying social media because they lack access to corporate data and algorithms. “Manipulation” has a negative connotation outside of science but it is the heart of the scientific method and the best way of inferring causation. Studies have found that people perceive research to be more risky when it is described by words like “experiment” or “manipulation” rather than “study,” but it’s not always the case that randomized, controlled studies pose more risk than do observational studies. The incremental risk that a study — of whatever type — imposes on users is clearly ethically relevant, and that's what we should focus on, not this crude proxy for risk. I would rather see Facebook and other companies engage in ethical experiments than retreat from the scientific method.

It’s also unclear to me why guidelines require more extensive review if the work involves a collaboration with someone in the academic community.