Sweeping Sand Under the Rug

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

This past weekend was the Memorial Day holiday, traditionally marking the official start of the summer season. But Memorial Day is more than just barbeques with friends and three-day sales at local department stores. Memorial Day is also the day when we honor the more than one million men and women who have died in combat or from injuries received while serving in the US armed forces. Among those we honor are the nearly 75,000 who have died since serving in the 1991 Persian Gulf War (also known as Operation Desert Storm).

Now, that number may seem surprising. After all, coalition forces suffered few casualties during the liberation of Kuwait.  Less than 300 American soldiers were killed on the battlefield, and only 114 of those were caused by enemy fire. The rest were accidents or friendly fire.

In the two decades since the Persian Gulf War, however, many of those who served  (as well as many of the civilian contractors who supported the war effort) have been come down with a chronic disorder known as Gulf War Syndrome. Characterized by a diffuse set of symptoms — fatigue, headache, memory loss, muscle pain and weakness, arthritis and joint pain, and respiratory problems — the disease now appears to afflict over a quarter of a million Gulf War veterans, or nearly a third of those who served in Operation Desert Storm. Of those affected, activists estimate, over 70,000 have died.

The disease itself is somewhat controversial. Several studies published in the mid-1990s found no evidence that those who served in the Gulf had increased rates of illness, hospitalization or death, at least when compared with veterans who served in other theaters of operation. Based on these and other data, in 1996 the Institute of Medicine (the clinical arm of the US National Academies of Science) concluded that there was no evidence of a unique chronic illness associated with military service in the Gulf. Despite this, and armed with an additional twelve years of data, in 2008 a federal panel known as the Research Advisory Committee on Gulf War Veterans’ Illnesses announced that Gulf War Syndrome is indeed a distinct physical condition.

The cause of Gulf War Syndrome is also unclear. Some blame exposure to Sarin gas or other chemical weapons stockpiled by the Iraqi government. While there is no evidence that Saddam Hussein’s troops ever used chemical weapons against the coalition forces, many soldiers may have been inadvertently exposed during demolition of these weapons during and after the war.

Others suspect that the cause of Gulf War Syndrome is exposure to organophosphate pesticides used to prevent the spread of insect-borne diseases common in the Gulf.  Still others blame the pyridostigmine bromide pills given to troops to protect against nerve gas, or the depleted uranium ammunition used by troops, or the toxic smoke produced when Iraqi troops set the oil fields on fire.

We may never know the cause of Gulf War Syndrome. This is particularly true since the US Veterans Administration (the VA) seems reluctant to study the disease or its causes. Doing so could put the Agency on the hook for billions of dollars in treatment costs. Not surprising then that the Agency is keen to prevent or suppress such research, at least according to testimony presented by former VA epidemiologist-turned-whistleblower Dr. Stephen Coughlin at a recent Congressional hearing.

According to Dr. Coughlin, the Agency prevents VA-supported researchers from publishing “anything that supports the position that Gulf War Illness is a neurological condition.” It also refuses to release data from the ten-year National Health Study of a New Generation of U.S. Veterans, a multimillion dollar study of nearly 60,000 Gulf, Iraq and Afghan war vets.

Similarly, the Agency has also never published the results of the National Cohort of Gulf War and Gulf War Veterans study, a medical survey of some 30,000 Desert Storm vets. Finally, in an act that is either the height of hubris or the height of incompetence, the Agency “lost” over ten years of data from the Gulf War family registry, a Congressionally-mandated study to look for congenital disorders among the children of vets, birth defects that may have been caused by exposure to chemical weapons or other wartime environmental hazards.

What’s surprising to me that Dr. Coughlin’s explosive testimony has not engendered more anger on Capitol Hill. His allegations that officials at the VA — the very federal agency whose job it is to provide treatment and care for veterans and their dependents — may have deliberately suppressed research into the causes of Gulf War Syndrome are shocking. This accusation deserves to be investigated and, if proven to be true, immediate action to correct the grave harm to those suffering from Gulf War Syndrome, those who have died of the disease, and their families needs to be taken.

For 22 years now, sick veterans have been told that they are crazy, accused of being hypochondriacs, or denied benefits because their condition is not related to wartime service. It may turn out, however, that none of that is true. Rather, as has happened too many times before, the government may have sacrificed the health and well-being of military veterans in order to save a couple of bucks. That’s not only shameful, it goes against everything those soldiers fought and died for.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 30, 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.]

Printing New Parts

by Jacob Dahlke, Bioethics Program Alum (MSBioethics 2012)

So this happened. “3-D Printer makes life-saving splint for baby boy’s airway.” Take a moment. Let that sentence wash over you for a moment. I envision it as a TV drama, with the surgeon rushing down the hallway, mask on and gloved hands pointed to the ceiling. Turning a corner, through the double doors and into the … IT department? I can hear it now, with the printer noise not unlike the old-school dot matrix printer, grinding and loud.

I suppose the scene was perhaps not quite the same. But the impact may be just as dramatic. 3-D printing is a relatively new technology in general, with home printers around longer than many people realize. And aside from the recent news of 3-D printers being used for other reasons, using them to make body parts compels some space-age style potential. Even this notion of making body parts is not new; I personally had my first exposure to it in 2007 when I had the fortunate opportunity to visit Anthony Atala‘s lab at Wake Forest. Not just bladders, but tissues, heart valves, bones, blood vessels, and soon entire limbs. How does this play into medicine today, and how could it be utilized to enact real change for patients?

One area of obvious impact is in the realm of organ donation. If one thinks about it, organ donation is a raw and crude process. Granted, the field has advanced dramatically since its inception. But the premise has always been fatally flawed, in my opinion; namely, the attempt to combine alien tissues with native ones in the setting of having to suppress an entire immune system. But if the new tissues were somehow recognized as familial – or better, if they were genetically identical to the host – then the rigorous process associated with immunosuppression could be put to rest. And that’s where 3-D printing comes in.

Let’s say I want to print an ear. Traditional printers take the digital image of the ear, use ink and spray it out onto a substrate, paper. It is spit out in a specific pattern based upon its digital instructions. 3-D printers use the same process, but use a more complicated (3-D) set of instructions (multiple pics of the ear to enable a composite image from all angles), with an often plastic-like ‘ink’ that dries as a solid, which can then be built upon by the next layer of printed instructions. The resulting product is a three dimensional object that looks like, well, an ear. But if the plastic-like ink were replaced by a different material altogether, or even by living cells, then the resulting object would have the potential for actually being put to use. Even better, if those living cells weren’t just any old cells but ones from the host himself, then it could be attached without having to trick the body into thinking it’s a foreign object.

I think that this technology holds great promise for medicine, as ethical concerns often arise with limited organs available to donate. It remains to be seen how this can help alleviate this vital but scarce resource, but I cannot help but believe that it will at least will improve medicine in the very near future. After all, “the future is here. It’s just not evenly distributed.” – William Gibson

Besides, 3-D is already passé. 4-D is where it’s at.

[This blog entry was originally posted in slightly edited form on Mr. Dahlke’s blog on May 28, 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.]

What a Wonderful World It Would Be …

by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)

Earlier this week my dad had surgery.  He has Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease) and has recently been experiencing pulmonary issues from a weakening of his diaphragm.  The surgery was for the placement of a diaphragmatic pacer.  Basically, he has wires running through his diaphragm muscle, and they gather into a plug on the outside of his abdomen.  He can exercise the diaphragm by connecting to a wall outlet.  The electricity allows the pace maker to move his muscle up and down.

He is one of about 500 people who have had this new surgery.  It was originally developed for patients with spinal cord injuries, but it has been approved by the US Food and Drug Administration (FDA) for humanitarian use in ALS patients.  The pace maker has been seen to slow the deterioration of the diaphragm muscle in ALS.  It helps some patients stave off the dreaded ventilator and is assumed to help lengthen the life and enhance the quality of life for the patient.

Being a patient’s family member at a hospital is a change for me and I am always watching closely to be an advocate for my loved one or to pick up tips if I am impressed with how the workers handle situations.  My observations on these days often end up in my posts.  I believe patient advocacy and interacting well with patients is a vital, but often lost art in medicine.  See my post “Otherwise Alone” for the tale of my aunt and her hospital admission after several mini-strokes.

That post was one of disappointment in the hospital staff; this one however is going to be far more uplifting.  I saw some truly wonderful things at Henry Ford Hospital in Detroit and believe praise should be given generously and that other medical professionals (myself included) can learn from members of their team.

Dad was the first surgery of the day and taken in right on time.  Some of the staff were kind enough to overlook the extra two family members huddled around Dad’s bed in pre-op, that is until his nurse came and cut the party in half.  She didn’t make a great first impression. (lesson: watch the tone, when talking to patients, even when…no…especially when enforcing the rules)  However, she later proved herself to be incredibly kind and thoughtful.  As they wheeled Dad away, Mom and I (the only family left in pre-op) were rather emotional watching him go.  It’s been a long and painful journey on this ALS road and the surgery was another scary step into the unknown.  The nurse was so kind; she put her arm around Mom and assured her that Dad had one of the best surgeons in the hospital and he would take very good care of her husband.  The nurse was calm and patient, she was truly empathetic and nurturing; in total, she was a credit to her profession.

The surgeon had given us a timeline and appeared to speak with us right on schedule.  The surgery had gone perfectly; Dad was breathing on his own and should be awake and able to have visitors within an hour.  The surgeon answered all of our questions and in no way gave the impression that he had anywhere else to be, though I know from experience that he probably had several things on his list that day.  He took time to talk to us about the new device, how we would be trained, and validated our desire to have more than one family member at the training.

Though this surgery can be outpatient, Dad’s surgeon likes to watch his ALS patients overnight to make sure they are not having complications.  Dad was admitted quickly to his private room.  Mom had told the staff earlier that she intended to stay with Dad overnight and that we had his motorized wheelchair with us.  So, when he was admitted he was given one of the biggest rooms on the floor, complete with a couch and extra pillows and blankets.

Dad’s nurse and nursing assistant continued the great care.  His nurse told him about a project she had done in school regarding ALS patients and that she had specifically requested to have him as a patient.  She specifically requested the complicated, wheelchair bound, ALS patient?  Outstanding…I certainly haven’t seen that before.  The last time Dad was admitted to a hospital they didn’t know what to do with him and kept trying to ignore that fact that he had ALS…um…it doesn’t work that way guys…it would be cool if it did, but it definitely doesn’t.  What a refreshing change to have a nurse who truly wanted to care for him, in spite of the complications ALS brings to a hospital stay.

The nursing assistant was another home run, she was Mom’s favorite member of the team: cheerful, hardworking, and helpful.  She never made a sour face when asked to do something, she was eager to help, and willing to allow Mom to help her with some of the tasks.  This was fantastic, Mom takes care of Dad every day and allowing her to help made Dad more comfortable and allowed Mom to pick up some tips on “how the professionals do it.”

At the end of surgery day, the surgical resident came in during his rounds.  Mom and Dad had seen him about 12 hours before and commented on his long day.  He cheerfully said it was normal and he would probably be on his way home in a half hour or so.  He did not give off any of the rushed, overworked resident vibe I so often see.  In spite of his long day, the fact that he was on call, and would have an even longer day tomorrow he sat and chatted with Dad for almost 15 minutes.  He talked about the surgery, how dad was feeling, and reassured him that the shortness of breath he was experiencing was expected and would resolve.  He treated Dad like a friend and chatted with him about why he chose to be a surgeon, he answered all of Dad’s questions about residency and the path to becoming a doctor like it was the first time he had heard them, and then told us about his future plans for his career.  My dad is a social butterfly and can make friends anywhere, with anyone, but it isn’t often you find a physician who will take the time for a conversation like that at the end of a long workday.

Overall, I was extremely impressed with the care and attention given my Dad at Henry Ford this week.  Mom spoke with one of the nurses about the care and how much we had all appreciated their kindness and compassion.  The nurse told her that at Henry Ford they were trained to treat each patient like they were your only patient and give every interaction your full attention.  What a wonderful way to train your employees!  In my opinion it is working well and other hospitals would do well to adopt this policy.

There is no deep bioethical analysis in this post, but I think it is important and can be inspiring to look at the successes in patient care.  Henry Ford cares for the whole patient as an individual, emotionally as well as physically.  This is a monumental task and they made it look effortless.  Imagine if every hospital experience were like this one…

[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on May 25, 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.]

Unintended Consequences: Obstruction of Patient Choice

by Sue Dessayer Porter, Bioethics Program Alumna (MSBioethics 2011)

Oregon was the first state to legalize aid-in-dying. Since 1998 it has implemented “Death With Dignity (DWD),” which allows eligible terminally ill people to end their lives peacefully with a legal prescription.

Contrary to fears asserted by the opposition, there has been neither a slippery slope, nor granny panels, nor hordes of people clamoring to Oregon in order to die. With fifteen years experience, DWD has demonstrated successfully that cautious adherence to the law provides safe choice and dignity at the end-of-life.

But in spite of this flawless record, there is increasing obstruction against choosing this autonomous and personal end-of-life option. The problem? As Catholic hospitals merge with financially imperiled medical centers or acquire independent medical practices, they are instituting religious policies which prohibit doctors from any participation with DWD. This restriction applies to all doctors, not only Catholics. Therefore, a Jewish physician treating a Protestant patient is dictated by Catholic doctrine. – Doctors are not even allowed to have a conversation with their patients about DWD, so the “duty to refer” to another physician is not even a consideration.

An unintended consequence? Section 127.885 (5) (a) of Oregon’s DWD Act allows a health care provider to prohibit another health care provider from participating in DWD (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx). This was a compromise incorporated into the law in order to appease the opposition and move the law forward. But in retrospect, lawmakers in the early 1990’s could not have predicted the merger activity by Catholic hospitals twenty years into the future. The state of medical economics has changed so dramatically in the last two decades, that private practitioners cannot sustain on their own; for survival, they are bought by medical centers. Therefore, doctors who previously supported patients through DWD can no longer do so. Washington state voted DWD into law in 2008 and is facing the same obstacles.

Catholic health care leaders claim to be in a savior mode, in that if it were not for them, many communities would be bereft of medical care. They state that they are “driven by a mission to serve the underserved” and profess a commitment to help every human being (http://www.nytimes.com/2013/05/13/us/hospital-mergers-in-northwest-).” This is a guise of altruism, as patients requiring end-of-life choices are being denied lawful alternatives. This pervasive barrier to aid-in-dying is affecting ever-increasing numbers of qualified terminally ill patients who try to avail themselves of DWD. Because their state voted DWD into law, residents of Oregon and Washington reasonably assume that their doctor-patient relationship entitles them access to aid-in-dying. Although this is a credible expectation, it is proving to be false too frequently.

Doctors are individually protected by conscience clauses to deny services that are in conflict with their personal beliefs. Alternatively, as long as freedom of choice is protected for doctors who do not want to participate in specific procedures, the same principle of choice should be guaranteed for doctors who do choose to offer what they consider responsible, ethical and dutiful medical care. And logically, a patient should be assured their right to self-determination.

Medical beneficence should be defined by the doctor and patient, not dictated by the religious views of a separate entity which controls with economic power.

[The contents of this blog are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Kudos to This American Life

by Michelle Meyer, Bioethics Program Faculty

A few weeks ago, I blogged about a recent episode of This American Life (TAL), “Dr. Gilmer and Mr. Hyde,” about the quest of one Dr. Gilmer (Benjamin) to understand why another, beloved Dr. Gilmer (Vince), had brutally murdered his own father after hearing voices that compelled him to do so. The episode ends (spoiler alert) with the revelation that Vince suffers from Huntington’s, a rare, neurodegenerative disease that causes progressive physicial, cognitive, and psychological deterioration.

Listeners, it seemed to me, could naturally conclude from the episode that it was Vince’s Huntington’s that had caused him to murder his father. That might or might not be true in this particular case. Huntington’s can cause behavioral and mood changes, including irritability, aggression and belligerence. It can also cause (less often) psychosis. But even if Huntington’s caused Vince to murder his father, or somehow contributed to the murder, the extreme violence that Vince displayed — strangling his father, then sawing off his father’s fingertips to preclude identification — is in no way typical of the Huntington’s population as a whole. And so what most troubled me most about the episode was its failure to note just how rare this kind of extreme violence is among those with Huntington’s, just as it is very rare among human beings generally. And so I wrote to TAL, requesting a clarification.

I’m happy to report that the TAL producer for the episode, Sarah Koenig — who had not intended to suggest any causal link between Vince’s murder of his father and his Huntington’s, much less between murder and Huntginton’s more generally — has issued a clarification on the show’s blog, and promises to make a similar clarification in the episode itself, should they ever re-air it. Kudos to TAL, and many thanks to Sarah for being incredibly gracious in our exchanges.

One clarification deserves another. In my earlier blog post, I also worried that some listeners might  conclude that Vince’s father was similarly driven to commit horrific acts of sexual abuse on Vince and his sister because he, too, was (presumably) suffering from Huntington’s (an autosomal dominant genetic disease). Although I think that a listener who didn’t know better could reasonably conclude that Huntington’s causes people to become sexual predators almost as easily as they could conclude from the episode that Huntington’s causes people to become murderers, nothing in the episode suggests that Sarah, Benjamin Gilmer, or anyone else at TAL believe that Huntington’s causes sexual abuse, or that they intended for listeners to reach that conclusion. I regret anything in my earlier post that suggested otherwise.

Again, I’m very grateful to Sarah and everyone else at TAL for hearing me (and other listeners) out and for agreeing to make the clarification — and just in time for HD Awareness Month!

[The contents of this blog are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]

Lara Croft: Cancer Activist

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

In an Op-Ed piece published in Tuesday’s New York Times, actress Angelina Jolie revealed publicly that she had undergone a prophylactic double mastectomy — removal of both breasts — in order to reduce her risk of developing cancer.

Ms. Jolie had a reason to be concerned. Genetic tests showed that she carried a mutation in a gene known as BRCA1, a change in her DNA that greatly increased the likelihood that she would develop breast or ovarian cancer sometime during her life. Cancer-causing mutations in the BRCA1 gene (or a related gene known as BRCA2) are rare, but account for a majority of familial cases of breast and ovarian cancer seen in the US.

Ms. Jolie likely inherited this mutation from her mother, who died of cancer at 56. Based on her test results, doctors estimated her lifetime risk of developing cancer at approximately 87%, probably at an early age. By contrast, the average woman in the US has a lifetime risk of 12%, with diagnosis usually coming later in life.

The decision to remove both breasts could not have been an easy one, particularly for a starlet who is famous for playing buxom femme fatales in movies like Lara Croft: Tomb Raider, Mr. & Mrs. Jones, and Salt. Ms. Jolie admits as much in her Times article. A prophylactic mastectomy doesn’t completely eliminate her risk of breast cancer, only reduces it by about 10-fold.

She is also at increased risk of developing ovarian cancer, but elected not to have her ovaries removed. A prophylactic oophorectomy, as that procedure is known, is an invasive procedure with long-lasting physiological effects, including early menopause, cardiovascular disease, osteoporosis, and loss of sexual function.

With recent advances in reconstructive surgery, there was no need for Ms. Jolie to go public. She wouldn’t have been the only Hollywood star to get breast implants, just one of the few that had a medical reason for doing so. Barring release of her medical records, a serious breech of privacy, no one would have been the wiser.

So why speak out? According to the actress, she wrote about her experience so that other women could benefit. Specifically, so women with a familial history of cancer could get tested for mutations in the BRCA1 and BRCA2 genes and, if necessary, to “take action.”

Having a spokeswoman like Angelina Jolie increase public awareness of breast cancer is good. It is a laudable goal, but it also one that worries me. Women who look to Angelina as a role model might rush to be tested for cancer-causing genes. However, the results of genetic testing have profound consequences — physically, psychologically and for future insurance coverage. In addition, the tests in question are very expensive. A single test costs approximately $3,000, and may not be covered by existing health insurance plans. Many women simply cannot afford to do what Angelina did.

These exorbitant testing costs are due to the fact that a Utah-based company called Myriad Genetics has patented both the BRCA1 and BRCA2 genes. Myriad currently holds a monopoly on testing for breast and ovarian cancer-causing mutations. The legality of this monopoly had been questioned, most notably in a US Supreme Court case challenging a private company’s right to patent human genes. But until the Court’s ruling in October, the company has every legal right to charge what it believes the market will bear.

Given this, only women with a clear familial history breast or ovarian cancer should be tested. But figuring who has such a history is not an easy task. As many as one in eight women in the US will develop breast cancer at some point in their lives, making it likely that most people will have a sister, mother, aunt or grandmother with a diagnosis. People can have as many as two, three or even four female relatives with cancer. But most of these cases will not be associated with mutations in BRCA genes. It takes a trained genetic counselor or skilled physician, using a detailed family tree, to know for sure whether or not a woman is a potential carrier of a mutant gene.

Moreover, for those unlucky few who do carry a mutant copy of BRCA1 or BRCA2, a prophylactic mastectomy or oophorectomy may not be the answer. Ms. Jolie made a carefully considered and informed decision, in consultation with a highly trained team of doctors, to undergo this radical procedure. But there are other less effective but less expensive and less invasive options, including tamoxifen or regular monitoring, that may be the better choice for many woman (particularly those that lack the savvy and resources of Angelina). I’d hate to think that they rushed to have their breasts removed simply because their favorite starlet had done the same.

None of these concerns I voice is meant to take away from what Angelina has done. Speaking publicly about her decision is a courageous thing to do. But the take-home message for women is far more nuanced than get tested and get treated.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 16, 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.]

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

 

 

from Michelle Meyer, Bioethics Program FacultySlide1

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 20th, 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.