Big Data, Big Research, Hardball University Politics, the Baptism of the Dead, and the Utah Autism Whistleblower
Like it or not. Legal or not. Government collects, maintains, and even shares and sells massive amounts of your personal data. This data collection starts before you are born and continues after you die. Government knows your name(s), social security number, age, birthdate, if and whom you married, and when. Were you ever divorced? Do you have children? What are your unchanging physical characteristics, like your height and eye color? Government likely has several photos at different ages, and possibly even your DNA and fingerprints. Government knows how much you weighed at birth and how much you weighed when you got your first driver’s license. They know what kind of student you were, if you received special education services, and if you attended public schools, what your grade point average was. They certainly know how much money you reported making, and how you earned it, every time you filed a tax return. This list could go on and on including the use of your identifiable data for medical and educational profiling of you, your immediate and extended family members, alive or dead, for any research purpose they deem appropriate. And all of this without your consent.
Not only is government collecting massive amounts of your personal data, so are private entities. Your information is routinely gathered by social networks, websites, and businesses across a broad spectrum of situations and circumstances. Have you ever queried a product or topic in a search engine then to see advertisements or news feeds inundating your social media accounts, emails, etc. about the very topic or product you had just searched hours before? It seems impossible to avoid. Sometimes helpful and other times extremely annoying and invasive.
These government and private data efforts have become an industry of its own. That industry has many names, but for our purposes here we will call it “big data”. This industry has many components, the keys to which are large diverse sets of information growing at rapid, often exponential, rates. The purpose of “big data” is to help someone make money somehow, either quickly (often by way of targeted advertisements) or in the future (often by way of targeted research). Many agree “big data” is now a hot new asset class, a way to invest in a new form of intellectual property.
Businesses all over the world have turned their focus to data as a source of competitive advantage. But some of the biggest participants in the ecosystem of “big data” are large universities involved in medical, pharmaceutical, and biochemical research. These universities typically represent their primary mission as educational: to teach, train and prepare their students for productive careers as scientists and physicians. Increasingly, however, these universities have become focused on a different mission altogether: applying for grants, conducting basic and applied research, pursuing medical innovation, and ultimately securing patents for commercially valuable ideas, which they can then turn around and license for huge returns. If you thought universities paid their bills exclusively through tuition and alumni giving, think again. Increasingly, these universities participate in a different kind of industry, one best described as “big research.”
In the world of big research, whether it’s conducted in public or private universities, “big data” is deployed in the service of multiple applications all the way from electronic health records, drug safety and efficacy, finding a cure for cancer, or new buzzword topics and efforts such as “personalized healthcare”, or “large population-based disease surveillance”. All the medical data being collected must go somewhere, and it does, into databases all over the world. With “big data” growth comes huge benefits and the ever-increasing challenges of collecting, transmitting, storing, securing, protecting, sharing, displaying, analyzing, accessing provisions, and -yes-monetizing it.
It is hard to overstate the value and scope of “big data”. One area in which big data and big research have come together over the last few decades has been the pursuit of genomic research. Inputs to this research take many forms and require many kinds of data, including (but not limited to), genealogy, disease patterns, heritability patterns, DNA markers, gene expression, etc. Big research grant funds flow liberally to researchers with access to unique archives of such big data.
UTAH’S UNIQUE POSITION IN THE WORLD OF “BIG DATA”
The state of Utah has emerged as a vibrant cluster for the “big data” industry for medical research and specifically genomic research. Nowhere is this marriage of “big data” and “big research” better exemplified than the government run University of Utah’s (University), Utah Population Database (UPDB), which is housed at the Huntsman Cancer Institute (HCI). (HERE) The University proudly claims the UPDB “is one of the world’s richest sources of in-depth information that supports research on genetics, epidemiology, demography, and public health …” Since the mid- 1970s researchers “…have used UPDB to identify and study individuals and families that have higher than normal incidence of cancer or other diseases, to analyze patterns of genetic inheritance, and to identify specific genetic mutations.” As of August of 2020, the UPDB claimed to have over 42 million records from a combination of multiple government and private sources and was supporting approximately 400 research projects. (HERE). Quite an impressive claim and history.
For those who belief that genetics plays the primary role in the causality of autism, the UPDB is a rich resource. What better way to explore the genetics of autism than using the UPDB coupled with population-based autism surveillance efforts. Utah, has in fact, been doing this since the 1980’s. Edward Ritvo, a child psychiatrist at the University of California at Los Angeles (UCLA), led efforts to make Utah one of the first states in the United States to conduct a population-based prevalence study on autism, The UCLA-University of Utah epidemiologic survey of autism: prevalence. (HERE).
Autism is only one of many well-known gene targeting efforts at the University that have received widespread recognition. First and probably the most notable is the 2007 Nobel Prize winner, Mario R. Capecchi, for his “pioneering work on “knockout” mice technology, a gene-targeting technique that has revolutionized mammalian biology and allowed the creation of animal models for hundreds of thousands of human diseases, including modeling cancer in the mouse.” (HERE). Equally important are HCI’s ongoing and high-profile efforts to find a cure for cancer. “Big data” in Utah is seen as an essential way to unlock “answers to how individual patients can be treated for cancers” highlighting that the UPDB is a vital “treasure trove of information.” (HERE)
With respect to autism, Utah has been a leader in autism genetic research. Unlike other states such as Wisconsin HERE) and North Dakota (HERE-), Utah was the very first to tie autism prevalence studies and gene research as a consistent long term project. Ritvo’s UCLA team carried out the first autism twin study in America (twin studies are often used to assess the relative contributions of genes and the environment). (HERE , HERE , HERE) One of the original team members, a psychiatrist from the University named William McMahon, would go on to co-author over 30 subsequent papers on the connections between genes and autism. McMahon would become a central figure in the events described below.
BAPTISM FOR THE DEAD
Early medical and genetic research in Utah based on “big data” would have been impossible without the support of the Church of Jesus Christ of Latter-Day Saints (LDS). The LDS church was a uniquely and extremely hospitable to the formation of a marriage between “big data” from their private, massive, and unmatched investments in genealogical data with “big research”, from Utah’s largest public research university. UPBD proudly discloses today that 2 million of their records are “original family history records”, without directly naming the LDS church. As described on the UPDB website, even if at least one family member had a vital event (birth, marriage, or death) in Utah they are selected for inclusion. In other words, LDS or not, multigeneration pedigrees are being used as a resource for “biomedical researchers.”
Many may ask why the LDS Church has been historically collecting multigeneration pedigrees. The answer goes to the heart of a central feature of the Mormon faith: the practice of conducting baptisms for the dead.
Most outsiders to the faith have never heard of the baptism of the dead, but for an LDS church member it is a sacred obligation to their forebears and one of the core benefits joining the LDS church provides. Their first prophet and founder, Joseph Smith, in 1840 revealed to the Saints that they “could now act for their friends who had departed this life” by being baptized in their behalf. In other words, baptism for the dead was an LDS practice to save all those who had died and were posthumously willing to obey the requirements of the law. (HERE) Faithful members are encouraged to submit to the LDS Church the names, birthdates, birthplace, etc. of all family members, friends, alive or dead, LDS or not. Baptisms for the dead could then be conducted in LDS temples for deceased relatives along with other ordinances such as priesthood ordinations and marriage sealings.
Practicing LDS church members are keenly aware that personal data submissions are used in conjunction with genealogy records and temple ordinations. Non-members, however, are likely unaware of an LDS relative’s submission of personally identifiable information for inclusion in LDS genealogy databases that can be used in unrestricted fashion by the LDS church after they die. Further than this, neither members nor non-members likely are aware of the LDS church’s participation in the sharing of identifiable pedigrees as a resource for biomedical research profiling at the University without their consent or knowledge.
In a privacy notice posted on the LDS website (HERE) the LDS Church readily discloses that they collect personal data from third parties. The LDS Church further discloses that "We may also use your personal data for internal purposes, including auditing, data analysis, system troubleshooting, and research. In these cases, we base our processing on legitimate interests in performing the activities of the Church.” No mention can be found of use of personal data for external purposes such as biomedical research. There is no specific mention of the LDS church sharing both identifiable family and individual data with the University and thus likely there are no options to “opt out” or give informed consent for identifiable data use by University researchers.
OTHER UTAH STATE GOVERNMENT “BIG DATA” EFFORTS
Utah government “big data” efforts continue to expand and do not just involve genes. Utah government is seemingly growing unchecked in their commitment to build larger and research friendly databases extending in many directions. Only recently are serious concerns being raised about Utah’s failures to protect citizens' privacy. Top on the list of potential offenders is the Utah Attorney General Sean Reyes’ $20.8 million contract with a private company, Banjo, to build a massive real-time police type surveillance system. As one opinion piece by Ron Mortensen stated, “Rather than questioning the privacy issues raised by Banjo, cities, counties, police departments and the University of Utah embraced it with open arms. Of course, none of these entities ever informed the public of what they were doing.” (HERE). The contract with Banjo was only recently temporarily halted when the founder was found to be affiliated with hate groups as a young man.
Privacy concerns also continue to rise as Utah government officials promote apps to track citizens' symptoms and contact information related to the COVID-19 pandemic. HERE. Students at one private LDS university, Brigham Young University (BYU), are rightly raising questions about whether Utah government will protect their personal health information amidst this pandemic. A recent news article in the BYU student newspaper, the Daily Universe states., “ Personal health information (PHI) and personally identifiable information (PII) are protected by privacy laws like the Health Insurance Portability and Accountability Act (HIPAA), (HERE), the Utah Communicable Disease Control Act (HERE), and the Family Educational Rights and Privacy Acts (FERPA). (HERE). Public health professionals and privacy law specialists agree there is a fine balance between sharing people’s private health information and protecting the health of the public.”(HERE). Likely these students have no idea that the LDS church in conjunction with the Utah Department of Health (UDOH), and the University UPDB, for years have been routinely receiving and sharing Utahn’s identifiable private health information. How do we know this has been happening? One of us, Zimmerman, is the Utah Autism Whistleblower.
UTAH AUTISM WHISTLEBLOWER
In 2002, while working at the UDOH, Zimmerman was asked by her supervisor to author and submit a grant proposal to the Centers for Disease Control and Prevention’s (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network. The health department was extremely interested in this federal funding for multiple reasons. Public and private health clinics in Utah were seeing drastic increases in the number of children with autism. If the UDOH could monitor the number and characteristics individuals with autism, the data then could be used to inform public policy decisions, plan for related services, improve community awareness, increase access to early screening, and perhaps paramount, the data could be used to study the causes, prevention, and outcomes related to autism. Fortunately, Zimmerman’s proposal was approved, funded, and entitled, the Utah Registry of Autism and Developmental Disabilities (URADD) otherwise know by the CDC as the Utah Autism and Developmental Monitoring Network. The CDC awarded the grants through a competitive process usually for a four-year grant cycle. Sites funded drastically changed overtime as well as sites with and without access to both school and health data. Changes in site selection and failure of some sites to have access to school records has directly impacted the CDC’s ability to make cross study year comparisons, a primary goal of the ADDM Network.
It is important to understand how the CDC ADDM Network determines autism rates. (HERE) in order to understand the conflict in which the Utah Autism Whistleblower became embroiled. Data sources are queried using ICD-9 diagnostic codes and special education classifications. Abstractors then go into the field to a review and gather extremely sensitive, identifiable, and detailed information on each child. Information collected includes such things as race, birth dates, addresses, schools, providers seen by type, diagnostic codes, educational classifications, intellectual ability indicators, test scores, as well as detailed word for word behavioral descriptions. Experts in autism then code the information to determine whether the individual meets the ADDM Network’s classification as an autism case. By virtue of its wide scope, the identifiable data is both highly sensitive to subjects and highly valuable to researchers. The ADDM Network, thus has strict data confidential and security policies required for a site and their staff’s participation ( HERE). Additionally, staff are required to receive policy training and sign agreements that they will respect data security and privacy provisions ( HERE) All data sources, including individual school principals and other educators plus other private and public health entity administrators are given copies of the CDC data confidentiality and security policies that will be followed.
With this background in mind, Zimmerman (who had run the privacy approval gauntlet in order to get URADD funded), in 2005, sought and obtained approval to move the CDC URADD grant and related activities to the University. There were many reasons for her to do this. For one, the Utah state legislature had drastically reduced retirement benefits, including at UDOH, affecting Zimmerman unless she retired. Zimmerman had already contracted with and provided funding to several University researchers to assist her in URADD CDC grant activities including researchers Drs. William McMahon, Judith Miller, and Deborah Bilder. McMahon by that time was the current head of the Autism Research Program within the University Department of Psychiatry, had been involved in the early prevalence and genetic research studies led by Ritvo, and continued working actively in the field of autism/genetics research. McMahon saw the grant as a valuable commodity, especially the extensive databases that came with it, and had therefore been actively recruiting Zimmerman since 2003. Zimmerman believed she had established a good working relationship with these researchers. It seemed to her at the time as if the University offered a more stimulating environment in which to extract insights and lessons for public health. McMahon and the UDOH committed to Zimmerman that she would remain in the role as the CDC URADD grant principle investigator (PI) and URADD Director, would receive state carryover funding if needed, and would be allowed to submit CDC grant proposals as the lead PI to the CDC ADDM Network as they became available. It seemed like a match made in heaven, so Zimmerman made the choice to accept McMahon’s offer with endorsements from the UDOH, under whose health authority health data was collected, and the CDC.
MCMAHON MOVES TO TAKE OVER THE URADD CDC GRANT DATABASE
Shortly after moving to the U of U a more sinister side of McMahon began to emerge as he immediately began breaching promises made to Zimmerman. Most outrageous of all these breaches was his move to take the lead role on the grant himself. In the world of research, it is usual and customary for the person listed on grant application as PI, sole author, and signatory with the funding agency, in this case Zimmerman’s agreement with the CDC, to have the Institutional Review Board (IRB) approval for the grant that was awarded under their name. Instead, McMahon insisted his name be substituted for hers on the IRB and designated himself there as the PI. Simultaneously McMahon began claiming to colleagues inside and outside the University that he was the original author and that “URADD was his grant.” ( HERE). From the outset of Zimmerman’s arrival at the U in 2005, she felt that McMahon was showing himself as someone who would abuse his authority as an administrator for personal gain, and she believed, would readily plagiarize, and steal someone else’s work in order to gain access to hundreds of thousands of identifiable school and health CDC ADDM grant records.
Why would McMahon be motivated to do this? First, McMahon desperately wanted to be chairman of the Department of Psychiatry. By promoting himself as the PI on a large, prestigious, federal grant his professional reputation and resume would be enhanced and his candidacy for chairmanship improved. Indeed in 2007, McMahon was successful in his bid to become chairman of the Department of Psychiatry at the University when Doctor Bernard Grosser stepped down after 29 years as chairman. McMahon was appointed as the next chairman. By 2012, Grosser had left the University in disgrace and surrendered his medical license for an “inappropriate relationship with a former patient. (HERE
Second and equally important, McMahon wanted to take over the rich trove of identifiable autism data to use as a resource for his personal research and business interests avoiding any oversite by Zimmerman. McMahon was eager for the glory of discovering the gene (or genes) that cause autism. Indeed, he was already preparing to file a patent titled “Autism associated genetic markers”, with a genomics company aptly named Lineagen (HERE), the provisional version of which was submitted in November 2008. (after over a decade of examination by the patent office, that application was eventually abandoned). At the time, the great autism gene hunt was in full swing and McMahon saw himself at the leading edge of what he hoped were commercially valuable insights.
Lastly, McMahon could use these hundreds of thousands of identifiable records as leverage for maintaining his power and position in the University administration while currying favor with his new boss, Dr. Vivian Lee. Lee joined the university in 2011 as the senior Vice President for Health Sciences, Dean of its medical school, and CEO of University of Utah Health. A graduate of Harvard-Radcliffe and a Rhodes Scholar at Oxford, Lee came to the University with a reputation as a hard-nosed, ambitious administrator of big research operations, one who had little patience for poor financial performance.
Lee and McMahon seemed to get off to a bad start. Lee had begun making major organizational changes in the health sciences arena. The Department of Psychiatry that McMahon led was by 2011 in severe financial crisis. Many junior and senior researchers had left the department under a dark cloud often voicing complaints to Lee on their way out. All but three autism faculty researchers, Drs. Amanda Bakian, Deborah Bilder, and Hilary Coon, would or had already left the Department. To top it off, Medicaid had fined a psychiatry staffed clinic, the Neurobehavior HOME Program, approximately 2 million dollars related to overbilling. By 2012 Lee became so concerned about the Department of Psychiatry under McMahon’s leadership, she engaged an outside consulting company to conduct an in-depth review and evaluation of departmental management and fiscal practices. Their report included harsh criticisms of McMahon’s leadership.
MCMAHON, BILDER AND BAKIAN REPORTED FOR RESEARCH MISCONDUCT
With financial obligations looming, McMahon was under pressure from his boss, Lee, to produce and implement recommendations from the unfavorable audit. The URADD CDC grant that Zimmerman had brought with her was one of only a few high-profile, multimillion-dollar, departmental grants. McMahon needed money to meet his shortfalls and started putting pressure on Zimmerman, by making what she saw as illegal and unreasonable demands to use earmarked federal grant dollars to pay for junior faculty salaries and research.
McMahon also started cutting corners in other areas., He told junior faculty that neither a research IRB was needed nor was URADD oversite research committee approval required for use of URADD CDC grant data, and that researchers “need not follow the signed CDC data confidentiality and security agreements” to which Zimmerman had committed for their participation in the CDC URADD CDC activities. Two researchers readily went along with McMahon’s quest for short cuts, Bakian and Bilder. Others did not.
By the summer of 2012, Zimmerman was increasingly concerned. She was unable to account for grant related dollars for which she was responsible. Moreover, Zimmerman had reason to believe Bakian had stolen identifiable CDC URADD grant data from a restrictive use server for research with McMahon and Bilder. Zimmerman believed these actions likely violated federal privacy laws and violated signed CDC data confidentiality and security agreements. If verifiable this meant McMahon had orchestrate a symphony of offenses: University commitments to data sources had been violated; University commitments to parents had been violated; University commitments to the CDC and other ADDM Network sites had been violated. Yet despite the blatant disregard for research ethics, when Zimmerman began to voice her concerns, University administrators ignored her and no one on the outside seemed to care, including the CDC, the UDOH, and the Utah Attorney General’s Office. Big research has incentives to look the other way when big data can bring in valuable grants
Hardball University Politics
Zimmerman went to multiple University administrators for help including Lee and University attorney Phyllis Vetter. Five key messages emerged from her outreach efforts to at least fifteen different administrators and attorneys:
- Stop asking privacy questions.
- If you keep asking for legal clarification, we will fire you.
- We will not help you unless you agree to share identifiable grant data with researchers
- The University owns the data and can do what the University wants with it.
- No one will help you if you keep trying to comply with the privacy agreements that you personally signed.
Not surprisingly, McMahon readily agreed to share identifiable data with his small cadre of research cronies. In the meantime, he decided he needed to get Zimmerman out of the way and began working with University attorney Scott Smith to get her fired. Beyond the obstacles to big data access Zimmerman was putting up, McMahon had little basis for his action. Zimmerman had passed a rigorous Review, Promotion and Tenure process in 2012 ( HERE), just prior to this. McMahon and Smith did not care as they forged ahead with their termination process. Zimmerman was eventually fired a few months later.
Lee, had no direct fingerprints on Zimmerman’s axing, but Zimmerman had little doubt Lee was supportive. She was an aggressive proponent of expanding the University’s use of big data and in September 2012 had convened a University wide strategic retreat, “Defining the Roles for the Utah Population Database.” ( HERE). Lee’s goals were made clear at the retreat, to get more case data for the UPDB anywhere and anyway they could and that included merging the URADD CDC grant database with the UPDB.
Over the next several years Lee continued her quest for more power and control over the University’s big research activities and big data assets. In a bold move that generated national headlines, Lee fired Dr. Mary Beckerle, the HCI Director and CEO by email in 2017. With that firing, Lee gained total control over the UPDB and the entire funding of the HCI. Beckerle’s firing was short lived, however, and the University never really disclosed all the reasons why Berkerle had been so abruptly fired in the first place. Many suspected it was because Beckerle raised concerns that donor dollars earmarked for the HCI had been diverted by Lee (HERE).
One key donor had been integral to the massive data collection efforts and cancer research funding in Utah, Jon Huntsman, Sr. Huntsman, a prominent Utah LDS businessman was reported to have donated over $1.4 billion to cancer research that created the Salt Lake City-based HCI at the University where the UPDB is housed. (HERE). Huntsman Sr, immediately pushed back on Lee’s hardball tactics, coming quickly and decisively to the defense of Beckerle, threatening to remove donor dollars from HCI if her firing wasn’t reversed. Huntsman Sr. then went on to pay for full page ads in a one of the largest newspapers in Utah, the Tribune. It just so happened the Huntsman family owned the Tribune at the time. Huntsman publicly humiliated Lee, attributing Beckerle’s firing to a “power grab by an unethical and dishonest Vivian Lee” (HERE) With Huntsman’s backing, Beckerle was reinstated and Lee resigned her post as the CEO of the University Health Care after weeks of turmoil.
The Huntsman family, to date, continues to financially support the University’s UPDB and HCI. (HERE) At least publicly, the family seems unconcerned that “People aren’t notified in advance when their health records or other personal information are sent to the database-but anyone born in Utah or who has been treated for a health issue while living here, or has had common interactions with state government, such as voting or registering a marriage is, likely included.” Since Jon Huntman’s Sr’s. death in 2018, the Huntsman’s family continues to make large donations to the University, including a $150 million dollar contribution to establish the Huntsman Mental Health Institute (HERE), which includes the Department of Psychiatry, where Zimmerman formerly worked and was fired after reporting privacy concerns and other illegal activities.
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Much could be written about what has happened at the University since Zimmerman’s firing in 2012. A very brief synopsis is as follows. McMahon, Bilder, and Bakian were successful in their efforts to access and use identifiable URADD CDC grant data for their research purposes and replaced Zimmerman in all CDC ADDM Network activities. Their research activities and, in Zimmerman’s view misconduct, continue. Two years before Lee’s resignation, McMahon called it quits and stepped down as department chairman for reasons that were never made clear. McMahon was granted “emeritus” status at the University and maintains a role as University community liaison on autism related issues. The Utah AGO continues to rigorously defend actions of the University including promoting the sharing of identifiable health and education records with researchers without parental consent or knowledge and continues to oppose free speech protections for government employees and University faculty under the Utah Constitution.
For the last seven years, Zimmerman’s legal claims (there are a number and are summarized HERE) have been slowly working their way through multiple court jurisdictions, including federal U.S. District Court, the Utah Supreme Court, and Utah State Court. Despite numerous objections from the Utah AGO, The Utah Supreme Court ruled that Zimmerman’s whistleblower claim was timely under the Utah Public Employee Protection Act and could move forward. The Utah Supreme Court did not render a decision on Zimmerman’s free speech claim under the Utah constitution, however U.S. District Court judge Parrish later dismissed the claim.( HERE). In U.S. District court, Zimmerman prevailed on her whistleblower claim and was awarded damages. (HERE)
Other Utah State Court claims are still in process. The Utah AGO was successful in moving Zimmerman’s breach of contract claim filed in federal court over to state court. With that change in venue, Zimmerman has been able to gather further evidence indicative of research misconduct by McMahon, Bilder, and Bakian. Zimmerman now has forensic evidence showing McMahon, Bilder. and Bakian used a forged data sharing agreement to justify accessing identifiable URADD CDC grant data for research purposes.( HERE) without Zimmerman’s knowledge or approval. Evidence also shows massive data errors and omissions in the URADD CDC database made by Bakian, were known to the CDC and McMahon, yet not corrected. (HERE)
What lessons can we learn from Utah’s “big data” efforts? Like it or not “big data” is here to stay. These large datasets are highly sought after by researchers particularly for the procurement of grant funding. The CDC ADDM Network is no exception. The Network had important autism surveillance goals, clear methodological procedures, and detailed data confidentiality and security policies in place. Despite all that, the University, the Utah Attorney General Office, the UDOH, and the CDC were all willing to put those goals, procedures, and policies on the back shelf when violations were reported. Legal or not? Certainly, on face value, research misconduct including intentional falsification of research findings and the forging of documents would be illegal. We may never know for sure. Until such a time as there is government accountability and transparency in the “big data” arena mistrust in government will continue to grow and, in our view, justifiably so.
Judith Pinborough-Zimmerman is Principle Investigator, Utah Autism and Developmental Disabilities Monitoring Network and URADD Director, 2002-2013, Assistant Research Professor, University of Utah, 2005-2013, Former Program Manager, Utah Department of Health. Mark Blaxill is Editor-at-Large for Age of Autism.