Where Social Justice Fits in Medical Decision-Making

by Susan Mathews, Bioethics Program Alumna (2014)

The current healthcare reimbursement system curtails treatment choices for Americans by narrowing networks, imposing strict guidelines for coverage or setting deductibles that are so high as to restrict to care.  But what does social justice have to say about this issue?

Social justice implies fairness and mutual obligation in society. As members of a social group, we are responsible for one another. We should ensure that everyone has an equal opportunity to succeed in life. Ensuring equal opportunity of access to healthcare is part of that obligation, as being reasonably healthy is a basic necessity to succeed at providing for oneself or one’s family.

To read more, click here.

[This post is a summary of an article published on Life Matters Media on November 17, 2014. The contents of this blog are solely the responsibility of the author and do not represent the views of the Bioethics Program or Union Graduate College.]

Care or Kickbacks?

In the complicated world of HMOs and referrals, some health care systems have started enforcing “continuity of care” policies that keep patients within that hospital system.  The stated goal of this policy is to facilitate care through one group of physicians and one medical record system.  However, it seems that systems like this do more good for the hospital budget than for overall patient care.  In a new blog post, Program Alumna Theresa Spranger discusses an experience that she had with one of these policies in “Continuity of Care or a Culture of Kickbacks?”

 

The Curious Case of Hobby Lobby

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership

The news was chock-a-block with important health stories this week, including new evidence debunking the vaccine-autism myth and the revelation that researchers conducted a legal albeit ethically questionable study that manipulated the emotions of nearly 700,000 Facebook users. But I want to talk about the 900-lb. gorilla in the room: the US Supreme Court’s decision in the so-called “Hobby Lobby” case (Burwell et al. v. Hobby Lobby Stores, Inc. et al.)

Hobby Lobby, a privately owned chain of 640 arts and crafts stores with more than 13,000 employees, appealed for an exemption to the contraceptive requirements of the Affordable Care Act. While Hobby Lobby includes most forms of contraception under its employee health insurance plan, they do not include those forms of contraception – intrauterine devices (IUDs) and morning-after pills – that they consider to be abortificants.

Whether or not those forms of birth control induce abortions (they largely don’t) is actually immaterial to this case. What matters is whether or not a private company like Hobby Lobby can forced to provide a form of contraception that runs contrary to the religious beliefs of the owners.

In a sharply divided 5-to-4 decision, the Supreme Court ruled that requiring family-owned corporations to pay for insurance coverage for contraception violated the Religious Freedom Restoration Act. Closely held corporations – businesses where more than 50 percent of the stock is owned by five individuals or less – will no longer be required to provide insurance coverage for contraception if doing so violates the owners’ religious beliefs.

The Hobby Lobby case revolved around two questions. First, can a for-profit corporation like Hobby Lobby be considered a ‘person’ under the Religious Freedom Restoration Act. That Act states that the government “shall not substantially burden a person’s exercise of religion”. As strange as it may sound, the answer to this question is an unequivocal ‘yes’. Corporations are presumptively treated as persons under the law, and the federal government has recognized that the Religious Freedom Restoration Act protects non-commercial corporations like churches.

Second, does the contraception mandate in the Affordable Care Act substantially burden Hobby Lobby? The Religious Freedom Restoration Act does not give carte blanche to all faith-based beliefs and activities. The parents of a severely ill child, for example, cannot refuse to allow lifesaving treatments even if those treatments violate their religious beliefs. But the law requires that there be a compelling state interest and the government use “the least restrictive means of furthering that compelling interest.”

A strong argument can be made that providing universal contraceptive coverage is in the best interests of the state. The social, economic, and medical benefits of preventing unintended pregnancy are significant. For example, every $1 invested in family planning services saves nearly $4 in pregnancy-related Medicaid expenditures. Hormonal contraceptives like birth control pills are also used to treat a variety of medical conditions, including migraines, premenstrual dysphoric disorder, and polycystic ovary syndrome.

This point wasn’t even in dispute. What the Supreme Court’s majority held, however, was that there were less burdensome alternatives to achieving universal contraceptive coverage. The federal government has already created exemptions to the contraceptive mandate for non-profit religious organizations, requiring insurance companies to offer contraception coverage directly to employees who want it rather than as part of an employer-provided plan. These exemptions could be extended to closely-held for-profit companies like Hobby Lobby.

This is where I find fault with the Supreme Court’s ruling. Writing for the majority, Justice Alito states that the federal government has “at its disposal an approach that is less restrictive than requiring employers to fund contraceptive methods that violate their religious beliefs.” But this too is being challenged in federal court under the Religious Freedom Restoration Act.

Over 100 religiously affiliated non-profits are suing over that accommodation, arguing that it amounts to complicity in sin. These employers are not providing or paying for contraceptives – the use of which violates their religious beliefs – but the very fact that they have to offer health insurance at all sets in motion the events that lead to contraceptive use. This, the plaintiffs claim, violates their rights. Should the various courts rule in their favor, the less burdensome alternative mentioned in Alito’s majority opinion could no longer exist.

Moreover, the question of complicity in sin is challenging one. It is more suited to philosophical or theological debates than courtroom testimony. For instance, should we apply this to the Hobby Lobby case, we could question the sincerity of that complaint by noting that their employee retirement plan invests heavily in companies that produce contraceptive pills and IUDs. They also sell large numbers of products that are made in China, a country whose one-child policy mandates the use of contraceptives or abortion as a means of controlling population growth.

In her scathing dissent, Justice Ruth Bader Ginsburg wrote, “the court, I fear, has ventured into a minefield.” No truer or more prophetic words have likely been written. Should current accommodations to the contraceptive mandate be struck down, for example, the majority opinion in Burwell v. Hobby Lobby will have no constitutional standing. The ruling is also likely to have far ranging consequences, as it calls into question decades of court decisions that have denied religious exemptions from laws that apply to all private businesses or individuals. The consequences of the Court’s expected but ill-considered decision are likely to be far-ranging and precedent-shattering.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 3, 2014, and is available on the WAMC website. The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

How an IRB Could Have Legitimately Approved the Facebook Experiment—and Why that May Be a Good Thing

by Michelle N. Meyer, Assistant Professor and Director of Bioethics Policy

By now, most of you have probably heard—perhaps via your Facebook feed itself—that for one week in January of 2012, Facebook altered the algorithms it uses to determine which status updates appeared in the News Feed of 689,003 randomly-selected users (about 1 of every 2500 Facebook users). The results of this study—conducted by Adam Kramer of Facebook, Jamie Guillory of the University of California, San Francisco, and Jeffrey Hancock of Cornell—were just published in the Proceedings of the National Academy of Sciences (PNAS).

Although some have defended the study, most have criticized it as unethical, primarily because the closest that these 689,003 users came to giving voluntary, informed consent to participate was when they—and the rest of us—created a Facebook account and thereby agreed to Facebook’s Data Use Policy, which in its current iteration warns users that Facebook “may use the information we receive about you . . . for internal operations, including troubleshooting, data analysis, testing, research and service improvement.”

Some of the discussion has reflected quite a bit of misunderstanding about the applicability of federal research regulations and IRB review to various kinds of actors, about when informed consent is and isn’t required under those regulations, and about what the study itself entailed. In this post, after going over the details of the study, I explain (more or less in order):

• How the federal regulations define “human subjects research” (HSR)
• Why HSR conducted and funded solely by an entity like Facebook is not subject to the federal regulations
• Why HSR conducted by academics at some institutions (like Cornell and UCSF) may be subject to IRB review, even when that research is not federally funded
• Why involvement in the Facebook study by two academics nevertheless probably did not trigger Cornell’s and UCSF’s requirements of IRB review
• Why an IRB—had one reviewed the study—might plausibly have approved the study with reduced (though not waived) informed consent requirements
• And why we should think twice before holding academics to a higher standard than corporations

State Pregnancy Exclusions are Bad Law

This guest post is part of The Bioethics Program’s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, in reverse chronological order, click here.

by Katherine Taylor, J.D., Ph.D.
College of Nursing and Health Professions, Drexel University

The Munoz case brought public attention to the Texas “pregnancy exclusion” law included in its Advance Directives Act, which says that life-sustaining treatment may not be withheld or withdrawn from a pregnant patient. Thankfully the state judge held that this law did not apply to Ms. Munoz because she was dead, and the hospital acceded to his order that Ms. Munoz’s body be released to her husband and put to rest.

These pregnancy exclusion laws exist not just in the “red” state of Texas, but in thirty-one states across the nation. I first wrote about these laws in a 1997 law journal article but the legal landscape remains essentially unchanged almost two decades later. Rather than using space summarizing these laws, I want to briefly sketch out some reasons why the exclusions are a very bad idea. The Munoz tragedy helps me illustrate my points.

What are the interests at stake in these cases? Ms. Munoz was dead, so some argue that she had minimal interests to be weighed against that of the state in the nonviable fetus (except there has been neglect of her, or society’s, interest in having her body respectfully treated rather than being used for experimental fetal gestation against her wishes and those of her family).  But other interests also have weight.

Ms. Munoz had an important interest in controlling in advance whether to refuse life-sustaining treatment. It is this interest that advance directive statutes convert into a legal right to execute a living will and appoint a health care proxy. Yet that right is given by these statutes with one hand and taken away by the other –the Texas pregnancy exclusion conferred on Marlise Munoz a lesser right than others to refuse life sustaining treatment in advance (as she orally did), because her right was made conditional on whether she was pregnant when the treatment would be removed.  The fact that she was only 14 weeks pregnant did not matter in Texas, and would not matter in most states that have enacted pregnancy exclusions. The question becomes whether women’s interest in prospectively making their end of life wishes known outweighs the state’s interests in a nonviable fetus. I believe it does.

Erick Munoz also had critical interests at stake. Surely Mr. Munoz had an interest in whether his wife’s body should be used to gestate the fetus, one that was not developing normally. Whether the child was healthy or not, Mr. Munoz would be the parent responsible for raising it. The Supreme Court made clear in Casey and other cases that persons have a liberty interest in controlling their procreation. Men’s procreative interest is rightly subordinated to a pregnant woman’s because of her bodily integrity. But when the woman is going to die, or is dead, the husband’s interest in avoiding reproduction should also come into play. The arguably experimental nature of the use of Ms. Munoz’s body also should require his permission. And again, family members should expect to be able to respectfully lay to rest the bodies of their loved ones. These interests, of Marlise and Erick Munoz, should outweigh the state’s interest in forcibly using a pregnant woman’s body to host a fetus that is not separate from its mother.

Yet that (more traditional) analysis is still incomplete because it is far too narrow. If we train a broader lens on the pregnancy exclusions, as we should, it becomes clear that the exclusions are part of a larger “pro-life” trend to treat fetuses as separate persons and patients. Nationwide, this trend translates into scary and grossly unjust scenarios where women lose their bodily integrity, autonomy, and inviolate legal personhood. Once the state sees the fetus as a separate person, it goes on to justify degrading pregnant women’s own legal status in numerous contexts of which we are all aware, from forcing pregnant women to undergo cesareans, criminally punishing them for causing the death of the fetus, to putting them in jail for having used drugs in their pregnancy. States have furthered that agenda by interfering with the ability of physicians to give good care to their patients according to accepted medical standards, and clearly the pregnancy exclusions do the same. When we do not explicitly recognize this larger context of women’s subordination, we ignore the injustice to all women that the pregnancy exclusions pose. Indeed, as I argue in my article, the pregnancy exclusions should constitute a violation of women’s equal protection rights.

Women’s extreme self-sacrifice, their role as the “moral proletariat” as Annette Baer described, is too often taken for granted. I end with summary thoughts from my article:

[The] pregnancy restrictions … accord women only conditional liberties, based on the social stereotype that women’s role as mothers appropriately requires of them extreme self-sacrifice for their offspring.  However, no matter how entrenched . . .  [that] stereotype may be . . . the state must protect against the legal imposition of that role, lest women become second-class citizens under law. Though women, like men, usually shoulder a complex set of relational identities, such as parent, child, sibling, and friend, it is of utmost importance that in the eyes of the state, women, like men, should be first and foremost independent persons with vital liberties deserving of vigilant protection.  Just as women’s moral agency should not be degraded because of their relational ties, so also their political agency should not be secondary to the uses to which they may be put for others.

Marlise Munoz’s body should not have been callously and forcibly used by the state as a means for fetal ends, and nor should any other pregnant woman’s body, whether she is dead or alive.

Musing about Munoz

This guest post is part of The Bioethics Program’s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, in reverse chronological order, click here.

by Jeffrey R. Spike, Ph.D.
Professor of Ethics and Samuel Karff Chair at the McGovern Center for Humanities and Ethics, UTHealth, the Academic Health Science Center for the University of Texas at Houston

Now that the legal and emotional drama has ended, it is a good time to think about what happened.

First, the legal and political forces in Texas showed a little more restraint than similar ‘pro-life’ forces in the Schiavo case.  Once a judge ruled that the Texas statue (TADA) did not apply, there was no appeal.  While less than a rock solid legal precedent, the ruling and lack of appeal should curtail future cases from proceeding down this path—hopefully in any state that has written a ‘pregnancy exclusion’ into their advance directives law.

Second, sad as the conclusion is, I doubt many people feel like two people died when the ventilator was stopped.  Rather, we have an interesting contrast that defines when a person’s life exists: the fetal life was not yet a person, and the deceased woman’s life was over and she was no longer a person.  No person died when they turned off the ventilator.

This interpretation helps us see why it was wrong to analyze the case as a situation where there once were two persons whose lives we hoped to save, and then only one person was left whose life we hoped to save.

Of course religious language likes to imbue objects with spiritual qualities.  It can make one sound deep, like a prophet.  But it can also mislead.  The terrible tragedy in this case occurred 6 weeks ago, on November 26.  All we have accomplished by keeping this pregnant woman in the ICU is to prolong the tragedy.

The one thing missing from every account was any ethics consultation service involvement.  Perhaps, like many hospitals, JPS has an ethics committee in name only, and there was never any ethics involvement.  In that case, the most important lesson might be the one that the Quinlan court taught us in 1976: do not go to court, keep these decisions at the bedside, and if you need help, ask for ethics involvement.

Would Marlise Munoz’s Fetus Have Survived? Should It Have?

This post is part of The Bioethics Program’s Online Symposium on the Munoz and McMath cases. To see all symposium contributions, in reverse chronological order, click here.

by Michelle N. Meyer, J.D., Ph.D.
Assistant Professor and Director of Bioethics Policy, Union Graduate College-Icahn School of Medicine at Mount Sinai School of Medicine Bioethics Program

Had the hospital not relented and removed the ventilator from Marlise Munoz’s body, could the Munoz fetus have been brought to term, or at least to viability? And if so, would the resulting child have experienced any temporary or permanent adverse health outcomes? Despite some overly confident commentary on both “sides” of this case suggesting a clear answer one way or the other—i.e., that there was no point in retaining the ventilator because the fetus could never be viable or was doomed to be born with catastrophic abnormalities; or, on the other hand, that but for the removal of the ventilator, the “unborn baby” was clearly on track to being born healthy—the truth is that we simply don’t know.

Before getting into the limited available data about fetal outcomes in these relatively rare cases, a bit of brush clearing. The New York Times juxtaposed reports about possible abnormalities in the Munoz fetus with the hospital’s stipulation about the fetus’s non-viability in ways that are likely to confuse, rather than clarify:

Lawyers for Ms. Muñoz’s husband, Erick Muñoz, said they were provided with medical records that showed the fetus was “distinctly abnormal” and suffered from hydrocephalus — an accumulation of fluid in the cavities of the brain — as well as a possible heart problem.

The hospital acknowledged in court documents that the fetus was not viable.

Whether intentionally or not, the nation’s newspaper of record implies — wrongly, I think — that the hospital conceded that the fetus would never be viable because of these reported abnormalities. In court, the hospital and Erick Munoz stipulated to a series of facts, including that Marlise was then 22 weeks pregnant and that “[a]t the time of this hearing, the fetus gestating inside Mrs. Munoz is not viable” (emphasis added). The hospital conceded nothing at all about any fetal abnormalities. In short, the Times, and many other commentors, have conflated “non-viability” as a function of gestational age with “non-viability” as a way of characterizing disabilities that are incompatible with life. As I read this stipulation, the hospital was not at all conceding that the fetus would never have been viable, had the ventilator remained in place. Rather, given the constitutional relevance of fetal viability, the hospital was merely conceding the banal scientific fact that the Munoz fetus was, at 22 weeks, not currently viable. There is nothing surprising in the least about the hospital’s “concession” about “viability” in the first sense, above: 22-week fetuses are generally not considered viable.

But what about the health of the Munoz fetus, which Erick’s lawyers, in the midst of arguing for the ventilator to be removed, reported showed signs of being “distinctly abnormal“? There’s little point in speculating about what are at this point (and are very likely to remain) vague, second-hand reports of private medical records, and still less about the possible causes of any abnormalities, which may have been genetic. Rather, let me make two observations about relying on reports (even if verified) of fetal “abnormalities” to argue for the removal of the ventilator.

Media Myths about Mammograms

by Sean Philpott, Director of the Center for Bioethics and Clinical Leadership

Like most married couples, my husband and I have a morning routine. I tend to get up first, shower, get dressed, get a cup of coffee, and make lunch. Dan is a little slower to get started, and likes to listen to a program like Good Morning America or the Today Show while ironing our shirts.

Normally the television is just background noise to me, but last week I actually stopped and listened in disbelief as ABC News correspondent Amy Robach revealed publicly that she’d been diagnosed with breast cancer. She underwent a double mastectomy later that week.

Ms. Robach’s diagnosis came after an on-air mammogram conducted in early October as part of Good Morning America’s cancer screening promotion, timed to coincide with National Breast Cancer Awareness month. The 40-year-old journalist had not undergone a screening exam before, but was pushed to do so by her producers and by fellow correspondent and friend Robin Roberts, herself a cancer survivor. According to Ms. Robach, by pressuring her to get a mammogram (the first ever to be nationally televised no less), Robin Roberts “saved my life”.

This is all well and good, and I wish Ms. Robach a swift recovery. At the risk of sounding cold-hearted, however, let me explain exactly what is wrong with this story.

The benefits of hindsight aside, Amy Robach should have never received a mammogram in the first place. According to guidelines issued by the US Preventative Services Task Force, an independent and non-partisan group of healthcare experts, most women should not undergo regular mammography until they are at least 50 years old. That Ms. Robach was pressured to do for the sake of television ratings is problematic to begin with, despite the apparently positive outcome. Worse yet is the false narrative about the benefits of routine cancer screening that the story creates.

For women with no family history of breast cancer, the likelihood of developing it is 1 in 70 for those in their 40’s. That rises to 1 in 35 for those in their 50s, and to 1 in 25 for women in their 60’s. Those seem like pretty high odds, so why shouldn’t every woman be screened annually? They shouldn’t because routine mammograms for women like Ms. Robach actually yield little benefit. But they come with considerable expense and risk.

Despite the possibility of developing cancer at a young age, conducting annual mammograms for all women in their 40’s will not significantly reduce the number of cancer-related deaths. In fact, only a single death will be prevented for every 2000 women so screened. The cost of routing testing aside, many of these women may also be harmed. Consider, for example, the physical and psychological toll of false test results.

Although mammography is the best screening tool we currently have, it is also notoriously inaccurate. On average, it misses 20-30 percent of all cases of cancer (so called false negative results).

Mammography also has a high rate of false positives: findings that look like cancer but are later determined to be benign. The chance that a woman will have a false positive result increases with every mammogram. According to the Susan G. Komen Breast Cancer Foundation, after just 10 yearly mammograms more than half of women will receive a false positive test result. They will only be determined to be cancer free after additional testing, including invasive biopsies.

Moreover, the psychological effects of a false positive can be profound. One recent Danish study found that women who received such false results suffered from anxiety and depression. These symptoms continued for years, even after cancer had been definitively ruled out. Inconvenient facts like these do not make for good television. Heartwarming stories of survival do.

By coming forward with her own tale of diagnosis and treatment, Amy Robach hopes to “inspire every woman who hears it to get a mammogram, to take a self exam. No excuses. It is the difference between life and death.” It probably will inspire more than a few women to get mammograms. Just as Katie Couric’s live colonoscopy led to an uptick in the number of people being screened for colon cancer, so to will Ms. Robach’s on-air mammography lead to more women undergoing that procedure. A few lives may even be saved.

Despite this, Amy Robach’s story is likely to do more harm than good. It will perpetuate the myth that more screening, starting at an earlier age, is a winning strategy in the on-going war on cancer. It will continue to confuse patients and clinicians alike about the potential benefits and limitations of routine testing, and contribute to the problem of overdiagnosis and overtreatment.

Universal screening programs, as promoted by Ms. Robach and her producers at Good Morning America, are not the answer. Such programs save few lives and come at great cost, despite what media reports might suggest.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on November 21, 2013. It is also available on the WAMC website. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Righteous Indignation

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Lately, I have heard several news stories that have shocked and saddened me.  I want to believe in basic human decency,in charity, and love of neighbor, but sometimes feel like evidence is contrary to my preferred view.

I know terrible aspects of society exist, but usually choose not to focus on them.  I feel they are anomalies and that people are generally good and decent.  Though, there are some stories lately that have threatened my world view.  I focus on these stores in this post because I think it is important that we as a civil society become outraged by these events.

Story 1: Texas – A 13 year old foster child runs away from her foster home.  She accepts a ride from three men, is taken to an apartment and repeatedly raped by up to 10 different men through the night.  Full story: http://www.theblaze.com/stories/2013/07/24/immigration-detainers-placed-on-two-mexican-men-charged-in-horrific-gang-rape-of-13-year-old-texas-girl/

Story 2: Oklahoma – A 23 year old college baseball player from Australia was shot in the back while walking down the street.  He was killed by 3 teenage boys who claimed to be “bored” and therefore decided to “kill somebody.” Full story: http://www.huffingtonpost.com/2013/08/19/christopher-lane-australian-baseball-player-dies_n_3782318.html

Story 3: Ontario, Canada – The family of a severely autistic child found an anonymous letter at their home.  The letter was full of hateful language putting down their child, calling him useless, unlovable, and suggesting the mother euthanize her son and allow scientists to harvest his organs.  Please read the full text of the letter, it is shocking.  Full story: http://www.theblaze.com/stories/2013/08/19/read-the-unbelievably-hateful-letter-sent-to-family-with-autistic-child-do-the-right-thing-and-move-or-euthanize-him/

Why did I choose these stories?  What links them to each other?  They all show a lack of respect for the human person.  The men in the first story lack respect for women and children.  The boys in the second, lack respect for human life and do not recognize moral consequences.  The woman in the 3rd story does not feel that a handicapped child or his family deserve to be treated with dignity or respect.

These events should outrage us, as decent citizens we should unite against this type of senseless violence.  I think they do outrage us, but are we giving them enough focus in the media? Are these events spurring us to discussions of causality or pointing us to a bigger flaw in the fabric of society?

It is said that you can tell the character of a man by how he treats those weaker than him.  We are a nation who sides with the underdog, we love the kid who stands up to the bully to protect the nerd, the hero who jumps on the subway track to save someone, the children who find victory and their place at the Special Olympics.

What type of character do the people in these news stories have?  Do the men who raped that poor girl have any decency?  Do the boys who killed that college student have a conscience?  Does the woman who wrote that letter have compassion?  These people are self-absorbed, concerned entirely with their own desires and comfort.  Their actions are cruel and evil.  In the first two cases the persons should be prosecuted to the fullest extent of the law.  In the third she should be held accountable for her rude behavior and publicly shamed by her neighbors.

Allowing these news stories to come and go is not enough.  We need to be outraged.  We need to denounce these types of senseless acts of violence as wrong.  Our world is full of gray areas, but is there still right and wrong?  And do we still know what that is?

Detroit is no exception to these types of unfortunate events.  We recently had two homeless men killed in a hit and run, they were not hit once, but by two different cars, neither driver stopped to care for these men.  I am ashamed to live in a city where that would happen.

There is decency left in our society though, and this gives me hope.  One of those men used to sit in his wheel chair by the freeway entrance, since his death someone placed his wheel chair on that corner and people have placed flowers and trinkets in his honor and written messages on the chair.  The other man was a regular at Detroit Tiger’s games, a bit of a local celebrity for fans.  Shirts were made up with this man’s signature phrase (“Eat ’em up Tigers”) and sold to cover funeral costs for the two men.  We are a good and decent people, but we need to remember this and express it more often.

Let us be: good, compassionate, loving, hopeful, helpful, and kind.  Let us build a world of respect and love for one another.  We are all different, but that is what makes life interesting and exciting.  How dull the world would be if we were all the same.

Different, but equal, no one of us is more important than another.  We have become a self-absorbed, self-obsessed culture, constantly on social media glorifying our own lives.  So many of us have lost our connection with other members of society, we have lost our sense of community, our respect for people, and the reality of responsibility and consequence.

For me, I want to see all persons, of all walks of life, races, sexes, intelligence levels, physical ability, religions, etc. treated with the respect and decency they deserve.  I will not stop being outraged by the news stories I shared and I will not stop working for a world where these stories cease to exist.

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on August 23, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

The Law, Ethics and Science of Re-identification (An Online Symposium)

 

 

from Michelle Meyer, Bioethics Program Faculty

Over the course of the last fifteen or so years, the belief that “de-identification” of personally identifiable information preserves the anonymity of those individuals has been repeatedly called up short by scholars and journalists. It would be difficult to overstate the importance, for privacy law and policy, of the early work of “re-identification scholars,” as I’ll call them. In the mid-1990s, the Massachusetts Group Insurance Commission (GIC) released data on individual hospital visits by state employees in order to aid important research. As Massachusetts Governor Bill Weld assured employees, their data had been “anonymized,” with all obvious identifiers, such as name, address, and Social Security number, removed. But Latanya Sweeney, then an MIT graduate student, wasn’t buying it. When, in 1996, Weld collapsed at a local event and was admitted to the hospital, she set out to show that she could re-identify his GIC entry. For twenty dollars, she purchased the full roll of Cambridge voter-registration records, and by linking the two data sets, which individually were innocuous enough, she was able to re-identify his GIC entry. As privacy law scholar Paul Ohm put it, “In a theatrical flourish, Dr. Sweeney sent the Governor’s health records (which included diagnoses and prescriptions) to his office.”

Sweeney’s demonstration led to important changes in privacy law, especially under HIPAA. But that demonstration was just the beginning. In 2006, the New York Times was able to re-identify one individual (and only one individual)  in a publicly available research dataset of the three-month AOL search history of over 600,000 users. The Times demonstration led to a class-action lawsuit (which settled out of court), an FTC complaint, and soul-searching in Congress. That same year, Netflix began a three-year contest, offering a $1 million prize to whomever could most improve the algorithm by which the company predicts how much a particular user will enjoy a particular movie. To enable the contest, Netflix made publicly available a dataset of the movie ratings of 500,000 of its customers, whose names it replaced with numerical identifiers. In a 2008 paper, Arvind Narayanan, then a graduate student at UT-Austin, along with his advisor, showed that by linking the “anonymized” Netflix prize dataset to the Internet Movie Database (IMDb), in which viewers review movies, often under their own names, many Netflix users could be re-identified, revealing information that was suggestive of their political preferences and other potentially sensitive information. (Remarkably, notwithstanding the re-identification demonstration, after awarding the prize in 2009 to a team from AT&T, in 2010, Netflix announced plans for a second contest, which it cancelled only after tussling with a class-action lawsuit (again, settled out of court) and the FTC.) Earlier this year, Yaniv Erlich and colleagues, using a novel technique involving surnames and the Y chromosome, re-identified five men who had participated in the 1000 Genomes Project — an international consortium to place, in an open online database, the sequenced genomes of (as it turns out, 2500) “unidentified” people — who had also participated in a study of Mormon families in Utah.

Most recently, Sweeney and colleagues re-identified participants in Harvard’s Personal Genome Project (PGP), who are warned of this risk, using the same technique she used to re-identify Weld in 1997. As a scholar of research ethics and regulation — and also a PGP participant — this latest demonstration piqued my interest. Although much has been said about the appropriate legal and policy responses to these demonstrations (my own thoughts are here), there has been very little discussion about the legal and ethical issues aspects of the demonstrations themselves.

As a modest step in filling that gap, I’m pleased to announce an online symposium, to take place the week of May 20^th, that will address both the scientific and policy value of these demonstrations and the legal and ethical issues they raise. I’ll cross-post my own contribution here, but the full symposium will be hosted over at Bill of Health. Participants fill diverse stakeholder roles (data holder, data provider — i.e., research participant, re-identification researcher, privacy scholar, research ethicist) and will, I expect, have a range of perspectives on these questions:

Misha Angrist

Madeleine Ball

Daniel Barth-Jones

Yaniv Erlich

Beau Gunderson

Stephen Wilson

Michelle Meyer

Arvind Narayanan

Paul Ohm

Latanya Sweeney

Jennifer Wagner

I hope readers will join us on May 20.