Category Archives: Ethics

The Nightmare Du Jour: Clearview AI Brings 1984 to 2020

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Professor FrancoBy Alexandra M. Franco, Esq.

Have you ever had a picture of your face as your profile picture on a social media website? If the answer is yes, then it is very likely that a company called Clearview AI has it. Have you ever heard of Clearview AI? You probably haven’t—that is, unless you watched this alarming John Oliver segment or read this spine-chilling report from Kashimir Hill in The New York Times which gives any Stephen King novel a run for its money. If you are amongst the majority of people in the U.S. who has not heard of Clearview, it’s about time you did.

Clearview is in the business of facial recognition technology; it works primarily by searching the internet for images of people’s faces posted on social media websites such as Facebook and YouTube and uploading them to its database. Once Clearview a finds a picture of your face, the company takes the measurements of your facial geometry—a form of biometric data. Biometric data are types of measurements and scans of certain biological features which are unique to each person on earth for example, a person’s fingerprint. Thus, much like a fingerprint, a scan of your facial geometry enables anyone who has it to figure out your identity from a picture alone.

But Clearview doesn’t stop there. Once it has created a scan of your facial geometry, its algorithm keeps looking through the internet and matches the scan to any other pictures of you it finds—whether you’re aware of their existence or not and even if you have deleted them. It does this without your knowledge or consent. It does this without regard to social media sites’ terms of use, some of which explicitly prohibit the collection of people’s images.

So far, Clearview has done this process with over three billion (yes, billion with a b) images of people’s faces from the internet.

Indeed, what makes Clearview’s facial recognition service so powerful is, in part, their indiscriminate, careless and unethical collection of people’s photos en masse from the internet. So far, the majority of companies in the business of facial recognition have limited the sources from which they collect people’s images to, for example, mugshots. To truly understand how serious a threat to people’s privacy Clearview’s business model is, think about this: even Google—a company that can hardly be described as a guardian of people’s privacy rights—has refused to develop this type of technology as it can be used “in a very bad way.”

There is another thing that places Clearview miles ahead of other facial recognition services: its incredible efficiency in recognizing people’s faces from many types of photos—even if they are blurry or taken from a bad angle. You might be tempted to think: “But wait! we’re wearing masks now, surely they can’t identify our faces if we’re wearing masks.” Well, the invasiveness of Clearview’s insanely powerful algorithm surpasses even that of COVID-19; it can recognize a face even if it is partially covered. Masks can’t protect you from this one.

And Clearview has unleashed this monstrous threat to people’s privacy largely hidden behind the seemingly endless parade of nightmares the year 2020 has unleashed upon us.

2020 has not only been the COVID-19 year.  It has also been the year in which millions of people across the U.S. have taken to the streets to protest the police’s systematic racism, abuse and violence towards African Americans and other minorities. Have you been to one of those protests lately? In the smartphone era, protests are events in which hundreds of people are taking myriad pictures with their smartphones and uploading them to social media sites in the blink of an eye. If you have been to a protest, chances are someone has taken your picture and uploaded it to the internet. If so, it is very likely that Clearview has uploaded it to their system.

And to whom does Clearview sell access to its services?  To law enforcement!

Are you one of those Americans who have exercised their constitutional right to freedom of speech, expression and assembly during this year’s protests? Are you concerned about your personal safety during a protest in light of reports such as this one showing police brutality and retaliatory actions against demonstrators? Well, you may want to know that Clearview thought it was a great marketing idea to give away free trials of its facial recognition service to individual police officers—yes, not just to the police departments, to individual officers. So, in addition to riot gear, tear gas and batons, Clearview has given individual police officers access to a tool that allows them, at will and for any reason, to “instantaneously identify everyone at a protest or political rally.”

Does the Stasi-style federal “police” force taking demonstrators into unmarked vehicles have access to Clearview’s service? Who knows.

Also, as I’ve mentioned in the past, facial recognition technologies are particularly bad when it comes to identifying minorities such as African Americans. Is Clearview’s algorithm sufficiently accurate so that it doesn’t arrest or even shoot a law-abiding Black citizen because his face is mistaken for someone else’s? Again, who knows.

In its website, Clearview states that its mission is to enable law enforcement “to catch the most dangerous criminals… And make communities safer, especially the most vulnerable among us.” In light of images such as the one in this article and this one, such statement is slap in the face of the reality that vulnerable, marginalized communities have to endure every single day of their lives.

I would like to tell you that there is a clear, efficient way to stop Clearview, but the road ahead will inevitably be tortuous. So far, the American Civil Liberties Union has filed a lawsuit in Illinois State Court under the Illinois Biometric Privacy Act, seeking to enjoin Clearview from continuing their collection of people’s pictures. However, even though BIPA is the most stringent biometric privacy law in the U.S., it is still a state law subject to limitations. As a Stanford Law Professor put it, “absent a very strong federal privacy law, we’re all screwed,” and there isn’t one. And we all know that in light of the Chernobylesque meltdown our federal system of government is experiencing, there won’t be one anytime soon.

If there is anything that COVID-19 has taught us—or at least, reminded us of—is that some of the most significant threats to life and safety are largely invisible. Some take the form of deadly pathogens capable of killing millions of people. Others take the form of powerful algorithms that, in the words of a Clearview investor, could further lead us down the path towards “a dystopian future or something.” And, speaking of a dystopian future, in his—very, very often referenced—novel 1984, George Orwell wrote: “if you want a picture of the future, imagine a boot stomping on a human face—for ever.”

Clearview probably has that one, too.

Alexandra M. Franco is a Visiting Assistant Professor at IIT Chicago-Kent College of Law and an Affiliated Scholar with IIT Chicago-Kent’s Institute for Science, Law and Technology.

 

I Can Do All Things Through Technology, Which Enables Me: Churches, Facial Recognition and Spiritual Dynamics

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Alex FrancoBy Alexandra Franco, JD

In my work as a privacy lawyer, I’ve become slightly desensitized to the pervasive privacy invasions that we have learned to live with—the fact that Facebook is well-aware of my love of makeup and will constantly remind me of “cool new eyeshadows to try” is something I don’t even think about anymore. However, there is a new technology threatening privacy that struck me as particularly appalling.

A company called Churchix provides churches with facial recognition software “designed for Church administrators and event managers who want to save the pain of manually tracking their members attendance to their events.” The software allows users to “receive demographic data of people attending [their] event (Gender, Age),” and “receive identification reports for a specific event, group of events and attendance of a specific member.” To get the facial recognition software going, churches must first take photos of their faithful to “register and enroll into the data base of Churchix.” After this, the churches will have access to streamlined, automatic attendance data—and won’t have to go through what Churchix calls the “pain” of personal interaction with their attendees.

The number of churches currently using this technology is as high as 40. Speaking at a conference at Loyola University Chicago School of Law, privacy attorney and partner at Edelson PC, Ari Scharg, mentioned that this technology is being used to track people’s church attendance patterns, such as how often they attend and how early they arrive, and that the churches can use this information to understand how much money church goers can be asked to donate.

Churchix claims that despite “honest concerns over privacy” and people’s “‘Big BrotChurch 4her’ mentality” about what the technology entails, it “think[s] that [such beliefs] are mostly a bad feeling derived from a possible abuse of the technology rather than actual threats.” The company website explains that “on the contrary, face recognition software helps catching the bad guys… .” But even the company’s own PR efforts on its website include articles that criticize Churchix for the serious privacy concerns that its technology raises.

As Michael Casey from CBS News says, “the growth of this [facial recognition] technology has far outpaced any efforts to regulate it… .” and if it keeps going the way it is going, it will be very difficult for regulatory bodies to take a stand fast enough to make a difference. The technology is already being used by advertisers in shopping malls to analyze what you are looking at on a store shelf, analyze your demographic information based on your facial characteristics and later show you a targeted advertisement with another item that you may be interested in based on all of this information. Churchix is a branch of Face-Six, the facial recognition business that offers the technology to shopping malls. In addition to offering its services to churches (through Churchix) and shopping malls, Face-Six offers its services to airports, border control, law enforcement, casinos and also for home security purposes.

When a single company is behind all of the different applications of the technology—from shopping malls and targeted advertisements to church attendance—how do we know that  people’s images uploaded to the Churchix database will not end up being used to sell them religious books later when they visit a mall that uses the same technology? What if you have been missing church for a few weeks, would you like to see an advertisement for a book about “regaining your faith?”

A few states—such as Illinois—have enacted laws protecting people’s biometric information. The Illinois statute protects people’s biometric identifiers, such as “a retina or iris scan, fingerprint, voiceprint, or scan of hand or face geometry,” among other things, by requiring that entities planning to collect such data inform the person in writing before collecting it, tell the person for how long and for what purpose they are collecting the data and have the person sign a written release. It also prohibits entities from selling or profiting from someone’s biometric data and requires that entities in possession of such data develop policies and procedures for its destruction.  However, Illinois is one of a few states currently taking steps to protect people’s biometric information and we are still far away from a comprehensive national regulatory regime.

Let’s instead think about this for a moment from the perspective of individual church members and the church community as a whole. Faith is a deeply personal thing which should be between the person and that which he or she believes in, something out of the human realm and out of the reach of human hands. It is a sacred communication between the person and something that transcends the physically human. Is it okay for a third eye in the sky to observe that person’s movements in and out of his or her place of worship? What are the deeper connotations of a pervasive intervention between a person and his or her faith? If church goers become aware that their movements in and out of the church are constantly being tracked, this may alter their church-going habits (as they may dislike being observed and tracked without having control over it) and may decide to stop attending church altogether. On the other hand, those who refuse to give up going to church will always have to think about that third eye who knows whether he or she went to church last week or not.

And what happens if we were to replace the word “church” in the last paragraph with the word “mosque”? It is not hard to imagine the potential for profiling and even more invasive targeting this technology—which works across different settings through the photo database—can bring.

For the most part, places of worship are still the heart and soul of their respective communities. They are groups of families and individuals who look out for each other and have each other’s back. When a congregation member is absent for a long time, other members will express their concern and reach out. If such interactions are interrupted by an automated attendance tracker, will it interfere with the community’s spiritual dynamics? To what extent will we allow technologies to alter human dynamics in their most essential manifestations? Only time will tell.

This isn’t about makeup. This is one of the most personal and private aspects of a person’s life, and we should not become desensitized to technologies which invade it.

Alexandra Franco is a Research Associate at the Institute for Science, Law and Technology at IIT Chicago-Kent College of Law.  The title of this essay is based on Philippians 4:13 “I can do all things through Christ who strengthens me.”

California’s Revenge Porn Statute: A Start but not a Solution

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By Lori Andrews

Susan, a professional woman in her 30s, met a man she thought she’d ultimately marry.  Their relationship was sufficiently intimate that she sent him a naked photo of herself.  When she caught him cheating, she broke up with him.  He took revenge by posting that selfie on a revenge porn website, along with her name, the name of her town, and her social media contact information.  She received messages from complete strangers asking for more naked photos.  As she went about her daily life, she was afraid that one of those men would stalk her.  She worried that her co-workers might have come across the photo.  She knew that if she applied for a new job, that nude photo would come up in a Google search of her name.  She’d been branded with a modern Scarlet Letter.

Across the Web, thousands of people attack their exes by posting disgusting comments about them, warnings not to date them, or nude photos of them.  On October 1, California Governor Jerry Brown signed into law a bill criminalizing what has become known as revenge porn.  The law assesses a thousand dollar fine in a narrow situation.  It is a misdemeanor for a person to photograph “the intimate body part or parts of another identifiable person, under circumstances where the parties agree or understand that the image shall remain private, and the person subsequently distributes the image taken, with the intent to cause serious emotional distress, and the depicted person suffers serious emotional distress.” Continue reading →

You are What You Eat: Vulnerable Populations, Access to Healthy Foods, and Diabetes

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SarahBlennerBy Sarah Blenner, JD, MPH

As the saying goes, you are what eat.  If that’s the case, what are we? Fat and sweet.  The American diet derives approximately 40% of its daily energy from added sugars and fats.  In 2000, low cost potatoes (i.e. potato chips), canned tomatoes, and lettuce constituted 48% of the average American’s total vegetable intake.  It has been well established that poor diet directly correlates with chronic health conditions, such as diabetes and cardiovascular disease.  A disproportionate amount of individuals who are obese or have diabetes and other chronic health conditions are of lower socioeconomic status. Thus, financial constraints coupled with the availability of healthy food options in certain communities play a major role in determining a person’s diet.  In combating what many have termed “the obesity epidemic” and the skyrocketing rates of diabetes (which is estimated to double or triple in the next 40 years), we must cater food policies towards at-risk populations.  Specifically, it will be important to look at food policies geared towards programs which have a significant impact on these populations, such as food stamps, food pantries, and school lunch programs. 

Recently, while sitting in a food pantry, I overheard several women talking about their strategies for getting food.  The women were complaining about the insufficient amount of money they received on food stamps and discussed strategies for stretching food stamps to bring home the most amount of food.  One woman expressed her preference for purchasing hotdogs over healthier options, exclaiming that she makes her decisions based on the maximum quantity of filling foods for the lowest possible cost.

It turns out that individuals like the women I overheard talking in the food pantry are making logical decisions about feeding themselves and their families.  Better to eat unhealthy foods than eat healthy and suffer the consequences of hunger.  Studies have shown that individuals who receive assistance from food pantries, meals on wheels, food stamps, or other forms of food assistance are more likely to face “food insufficiency” (not having enough food to eat because of financial constraints) than other populations.  This can have a serious impact on the health and well-being of individuals with chronic health conditions, such as diabetes.  For example, one study that analyzed hospitalizations at a particular urban hospital found that about 30% of the hospitalizations for individuals with Type 1 diabetes that were due to low blood sugar levels occurred because the individual could not afford to eat.  Another study conducted in Georgia found that elderly individuals who receive or are on the wait list to receive meals delivered to their home are significantly less likely to properly manage medications, which can have a devastating effect on the management of chronic health conditions like diabetes.

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Watch out Produce Aisle, Here Comes Dad!

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SarahBlennerBy Sarah Blenner, JD, MPH

Diabetes and obesity are serious health problems that are affecting an increasing number of Americans of all different ages.  The Center for Disease Control and Prevention (CDC) recently estimated that, based on existing trends, the prevalence of diabetes could increase from 1 in 10 adults to 1 in 3 adults within the next forty years.  This means that the CDC expects the number of people with diabetes to either double or triple by the year 2050.  While there is no single known cause for either type 1 or type 2 diabetes, there are a variety of widely accepted risk factors associated with both forms.  For example, type 2 diabetes risk factors include, but are not limited to: age, race/ethnicity, body mass index (BMI), activity levels, and family history.  Recent studies suggest that breast size, eyebrow color, and short stature might also be associated with an increased risk for diabetes. 

A recent study conducted on rats has even suggested that if a dad-to-be eats a lot of foods that are high in fat before his child is conceived, then he is more likely to pass the risk of diabetes and obesity on to his daughter.  This study might be the only one of its kind to report that a father can pass along a risk factor associated with diabetes that is not inherently genetic.  Although the study was conducted on rats, the researchers hypothesized that the conclusions of the study might be congruent in human populations, since obesity in men affects sperm function, sperm mobility, and the amount of DNA damaged in sperm.  If in fact the findings of this study are applicable to people, there may be some serious implications for future generations, as thirty-four percent of adults are considered obese, an additional thirty-four percent of adults are considered overweight and the rates of diabetes in the adult population are drastically rising. 

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Unearthed Syphilis Study Demonstrates the Purpose of Ethical Regulations in Human Clinical Trials

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Robert Enneser by Robert Ennesser

In 1946, American researchers went to Guatemala and infected 1500 prisoners, orphans, and patients in mental institutions with syphilis and gonorrhea under a U.S.-Guatemalan government partnership.  Today, such experimentation would not occur because of strict research requirements including documenting details of human research and obtaining approval from Institutional Review Boards to move forward with human research.  While ensuring research requirements are met can seem tedious for researchers, Professor Susan Reverby of Wellesley College recently provided a reminder of why those regulations are in place – to ensure the safety of human participants in clinical studies.

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From Nude Photos to Naked Genomes: Berkeley Gets Poor Marks on Frosh Gene Tests

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Lori Andrews by Lori Andrews

What do George W. Bush, Hilary Clinton, Meryl Streep and Wendy Wasserstein have in common?  As incoming freshman to Ivy League universities, they were required to pose nude for photographs.  The goal of the project was to correct students’ posture—and to correlate posture with later life achievement.  From the Ivy League, the practice spread across the country until a female freshman at the University of Washington in Seattle challenged it.  In 1968, the program was abandoned, under criticism it was eugenic.

I attended Yale after the demise of the notorious photo program.  But when I read about U. Cal Berkeley’s recent plans for its incoming freshman, I realized Berkeley officials hadn’t learned the lesson of the posture program.  Rather than requiring nude photos of their students, Berkeley officials were planning to peer at students’ DNA.  Indeed, they were opening the door for sensitive genetic information to be made available about our future leaders–their current students.

The Scope of the Berkeley Program

Last summer, 5,000 incoming students at University of California, Berkeley received a surprise along with the packet of information about their freshman year.  Their admissions packet contained an item that looked like a Q tip and an invitation to swab the inside of their cheeks for genetic testing.  The targeted genes were involved in breaking down lactose, metabolizing alcohol and absorbing folic acid.

The program came under criticism from lawmakers, bioethicists and even the California Department of Public Health.  Now Berkeley has significantly cut back the program.  What lessons should Berkeley officials learn from this experience? 

Lessons to be Learned

1.    In the quest to be avant garde, don’t forget the basics

Berkeley officials seem to have been caught up in the novelty of the program.  “Science is moving so fast right now,” said Alix Schwartz, director of academic planning for the college’s undergraduate division. “If we assigned them a book, it would be out-of-date by the time they read it.”

Think hard about that comment.  Parents are spending up to $40,000 a year to send their children to Berkeley.  In most of their courses, students will be assigned books to read.  It would not be unreasonable for parents to ask, is it really worth $160,000 for my child to get an obsolete education?  Why don’t I just get a quickie genetic profile done on my child an put him or her in a job best on the genotype?

2.    Take responsibility for the well-being of your students

Years ago, psychology professors routinely required their students to be subjects in experiments as part of their course requirements.  Now the Code of Ethics for psychologists forbids this sort of coercion of students.  But Berkeley’s “offer” to students, although presented as voluntary, was itself coercive.  “The consent form for the project is pure marketing,” Jeremy Gruber, the president of the Council for Responsible Genetics told California lawmakers at the August 2010 hearing on the program.  The form listed speculative, unproven benefits of the testing, but none of the risks.

The genetic testing program was replacing the “one book” program to give students a common experience to discuss.  A student entering Berkeley might feel compelled to swab rather than risk ridicule by others or marginalization by not participating.  Or worse yet, by saying “My parents wouldn’t let me send in my DNA.”

And what happens when the students started discussing the results of their tests?  Would those who were poor metabolizers of alcohol be left behind when others went to the local bar?  And, as Boston University public health professor George Annas asked, would those who had genes related to alcohol tolerance feel they could drink to excess? 

3.    Look closely at conflicts of interest

According to the consent form for the project, the students DNA sample would “become the property of the University” until its destruction and the university would “save the data for future teaching purposes and for possible publication of the aggregated data and its analysis.”  Such an approach makes one wonder if the project is being undertaken for the students’ benefit or for that of university researchers.  Indeed, the professor behind the program had formed his own genetic testing company last year.

There was also to be a writing contest where the winning students would have a chance to win further genetic testing from 23andMe, a private company that offers DNA profiling.  But should a public university be endorsing a private company?  “The FDA and Congress are currently investigating this type of testing, described as ‘snake oil’ by a member of the House Energy and Commerce Committee at a recent hearing, also described as ‘not ready for prime time’ by the Centers for Disease Control,” Gruber said at the California hearings.

4.     Check the legality of what you are doing

Berkeley planned to do the genetic testing in one of its university labs and provide the individual results to the students.  But its labs had not complied with state and federal requirements, such as the Clinical Laboratory Improvement Act, which cover any lab that provides a medical result back to a consumer.  These laws are designed to ensure the accuracy of the test results.  The university argued that it was not providing medical information and thus was not covered by the laws.  But that argument was just not credible, given the university’s position that this information could be useful to students in planning preventive measures.

Ultimately, Berkeley backed off of its program when the California Department of Public Health warned that the plan to have students’ DNA samples analyzed at an uncertified lab would violate state law.  Now, instead of offering individual test results to students, it will only post aggregate results.

Berkeley’s Poor Marks

The Berkeley administration deserves poor marks on how they handled the program.  In fact, they seemed to have flunked psychology (with a coercive program), law (not complying with statutes), biology (by not acknowledging the limits of predict
ive value in the tests they were offering), ethics (creating a potential conflict of interest) and history (not applying what had been learned from posture photos debacle).   Perhaps now they’ve learned the lesson that the use of genetic tests needs to be analyzed and contextualized–which, after all, are the hallmarks of any great college education.

Free Tibet Based on Cultural Differences, Not Genetic Differences

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Jake Meyer by Jake Meyer

A group of scientists at the Beijing Genomics Institute has discovered the quickest example of human evolution to date.  A study revealed that at least 30 genes have undergone evolutionary changes in Tibetans in the timeframe of 3,000-6,000 years.  The discovery is interesting from a purely scientific standpoint, as an example of how quickly the human genome (and therefore, human body) can change and adapt to its environment.  Tibetans, who have long sought to have Tibet to be a sovereign nation, could be tempted to use this discovery to argue that Tibet should be recognized by China, but the characterization of Tibetans as genetically distinct could have unwanted consequences.

These genes are responsible for Tibetans’ ability to live and work at high altitudes.  The Tibetans live at altitudes of over 13,000 feet, where the air contains 40% less oxygen than at sea level, but Tibetans do not suffer from the effects of mountain sickness. The study found 30 gene variants that were rare among the 40 Hans Chinese in the study were much more common in the 50 Tibetans in the study.  A variant of the gene hypoxia-inducible factor 2-alpha (HIF2a) appeared in 87% of Tibetans in the study, and only 9% of Hans Chinese.  Tibetans with this variant of HIF2a had less red blood cells and therefore less hemoglobin in their blood, which would help explain less susceptibility to mountain sickness. 

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Health Impact Assessments: A Policy Tool for Health Reform through Prevention and Planning

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SarahBlennerBy Sarah Blenner, JD, MPH

Tamar is a sophomore in high school and plays on the school’s water polo team.  Her team practices in the swimming pool after classes are over for the day.  Following practice, when Tamar takes public transportation home, she has to transfer at two different bus stops before making it home.  Formerly, the trip lasted 45 minutes, but with recent reductions in bus service, the trip now lasts an hour and a half, leaving Tamar less time to complete her homework.  Tamar now has to wait longer on street corners at night, where she is increasingly exposed to a variety of negative elements such as extreme weather, cigarette smoke, gang violence, potential sexual assault, and the use of drugs by the people around her.  Longer exposure to these risks may increase her chance of engaging in behaviors that will negatively affect her health.  Had the policy implementing the bus cuts been subject to a formalized planning process that evaluated future impacts on the health and safety of those who use the public transit system, recommendations may have been implemented including maintaining frequent bus routes in critical neighborhoods or when students who participate in after-school activities are leaving school.

There are many factors that contribute to our health, such as individual behavior, societal influences, genetic predisposition, health care, and the physical environment.  In order to improve our health or the health of our communities, we must address these factors.  For one, environmental exposure can occur both through direct and indirect exposure.  Direct exposure occurs when an individual comes into contact with toxins, e.g. chemicals found in paint, the air, or even baby bottles.  Health can also be affected by indirect environmental factors, such as housing, urban development, land use, and transportation.  Tamar, the high school student who took the bus home from school, will be negatively affected by indirect environmental exposures.

The health of Americans is in need of improvement. According to the Center for Disease Control and Prevention (CDC), 34% of adults are considered obese, and another 34% overweight; 10% of adults in the U.S. have either diagnosed or undiagnosed diabetes; and 7.5% of adults in the U.S. have been diagnosed with asthma.  Former Interim President for Partnership for Prevention Corrine Hudson once said “[r]eal health reform must start with prevention.  Without a much stronger emphasis on prevention than now exists, we have little hope of controlling costs without sacrificing health.”  Health Impact Assessments do just this. Health Impact Assessments have been defined by both the World Health Organization (WHO) and the CDC as “a combination of procedures, methods, and tools by which a policy, program or project may be judged as to its potential effects on the health of a population, and the distribution of those effects within the population.”

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Rebecca Skloot’s Journey into the Life of Henrietta Lacks

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Lori Andrews by Lori Andrews

In 1890 a man sold the rights to his body after death to the Royal Caroline Institute in Sweden for research purposes.  Later, he tried to return the money and cancel the contract.  In the subsequent lawsuit, the court held that he must turn his body over to the Institute and also ordered him to pay damages for diminishing the worth of his body by having two teeth removed.

Photo of Lori Andrews and Rebecca Skloot

Lori and Rebecca Skloot

Today, it would be an anathema for a person’s body to be used against his wishes or for a research subject not to be allowed to withdraw from a study.  In fact, the Uniform Anatomical Gift Act allows people to change their minds and withdraw a previous agreement to donate organs and tissue after their death and the Federal research regulations allow people to withdraw from studies without penalty or loss of benefits.  Yet the law is murky regarding research on a person’s tissue outside of his body and some modern doctors and researchers emulate the Royal Carolina Institute and stake their claims on materials from people’s bodies.

In 1951, a 31-year-old African-American woman, Henrietta Lacks, died of ovarian cancer.  Without the knowledge or consent of Lacks or her family, her tissue was taken and made into a cell line that has been extremely valuable for research and is still sold today.  In an interview in 1994, her husband said, “As far as them selling my wife’s cells without my knowledge and making a profit — I do not like that at all.  They are exploiting both of us.”
Body Bazaar Cover Image
Dorothy Nelkin and I wrote about Henrietta in our 2000 book, Body Bazaar: The Market for Human Tissue in the Biotechnology Age.  Over the past decade, journalist Rebecca Skloot probed more deeply.  In The Immortal Life of Henrietta Lacks, Skloot tells a moving story of how the unauthorized use of Henrietta’s cells (known to scientists as HeLa cells) provided the foundation for most modern medical discoveries.  I caught up with Rebecca Skloot on her whirlwind book tour when she spoke at the Northwestern Medical School.

Skloot-Book-CoverShe described how Henrietta’s cells formed the basis for much of the scientific enterprise across the world in the decades since her death.  Virtually every high school biology student, every medical student, and every vaccine maker has manipulated her cells.  While fortunes have been made on the foundation of the HeLa cells, her own children lacked access to education and basic health care.  In fact, when her children were contacted decades after her death by researchers wanting their tissue, they completely misunderstood what scientists meant by research on their mother’s cells.  They visualized their mother as still alive, in a cell, being researched upon.

But they are not the only people kept in the dark about tissue research.  How many people realize that their tissue is being used today without their knowledge and consent?  Over 282 million archived and identifiable pathological specimens from more than 176 million individuals are being stored in United States repositories.  Some specimens are anonymized or coded and not identified with specific individuals; others carry patient names or codes that allow personal identification.  Virtually everyone has his or her tissue “on file.”

Expanding markets have increased the value of this tissue, and institutions — hospitals, research laboratories, and the state and federal repositories that store tissue samples — find they possess a capital resource.  Medical centers have deals in place with biotech companies to do genetic research on their hospital patients’ tissue without the patients’ permission.

This lackadaisical approach to consent has recently been called in question.  A Native American group, the Havasupai, gave tissue to a scientist for research on diabetes.  Instead, the scientist undertook research about schizophrenia and in-breeding, which stigmatized the Havasupai, and research about geographical origins, which conflicted with the Havasupai’s religious beliefs.

When the researcher was challenged in federal court, the judge found that the Havasupai had asserted valid claims for intentional infliction of emotional distress, negligent infliction of emotional distress, civil rights violations, negligence and gross negligence.  In April 2010, the researcher’s university settled with the Havasupai, paying $700,000 to 41 members of the tribe for using their tissue without appropriate informed consent.

The attention being paid to Skloot’s excellent book and the good news of a settlement in the Havasupai case are spurring societal discussion about the use of tissue samples.  Clear laws and regulations are needed to assure that no one’s tissue is used without specific informed consent.

The specifics of Henrietta Lacks saga will soon be made into a movie, with Oprah as an executive producer.  But her story affects us all.  Hospitals, universities, research centers, and private depositories retain pathology samples and genetic data collected in the course of surgical procedures or research projects — a fact unknown to most patients.  New laws are needed to make sure we are not a nation of guinea pigs.