History is an essential tool for understanding our world today, as well as for planning the future. Whether learning about ancient societies or our human ancestry, Dr. Linda Ellis is passionate about finding the roots of the current dilemmas that affect us all. She is fascinated by how civilizations negotiated their natural and social environments and how they made contributions, as diverse as infrastructure engineering and political organization, that are still in use. Documenting historical and personal events is of equal interest—from a millennium of ancient Roman writings, consulted to this day, to the billions of records that allow us to trace our ancestors’ migrations.
Linda Ellis is an expert curator having served as Senior Curator of the University Museum at San Francisco State University and as a Guest Curator for Ancient & Ethnographic Art at Mills College Art Museum. For over ten years, Dr. Linda Ellis served as a national museum surveyor, conducting on-site evaluations of museums for the Museum Assessment Program of the American Association of Museums. She has studied museums and their collections in Germany, England, France, Greece, Bulgaria, former Yugoslavia, Romania, Austria, the South Pacific Islands, Canada, and across the U.S. Linda was also the Western Regional Representative for the Committee on Museum Professional Training of the American Association of Museums. Her love of museums has helped many to understand their importance not only for the teaching of history, culture and science, but also for preserving the past for future generations.
As a professor, Linda Ellis shared her knowledge of museums, history, and archaeology. She began teaching in the Anthropology Departments at Harvard University and the University of Massachusetts-Boston and in the Classics Department at Tufts University. While at San Francisco State University, Dr. Linda Ellis developed and taught 19 new courses across 3 departments (Anthropology, Classics, History). Linda Ellis initiated, and administered for 24 years, all aspects of the Master of Arts degree program in Museum Studies (preparing students for careers in museums throughout the world), including design and budgeting of state-of-the-art museum teaching facility, developing educational policies and procedures, and advising on hundreds of museum internships and Master’s theses.Dr. Ellis started her career specializing in archaeology and socio-political history of Eastern Europe and the Balkans, regions that will continue to impact the future of Europe. In addition to her teaching and curating roles, she continued archaeological research in Romania for 30 years, while under a totalitarian dictatorship and its subsequent transition and evolution in the post-communist era. Follow Linda Ellis on Twitter!
A Collection Of Articles By Dr. Linda Ellis
DNA Testing, Ancestry & Health: A Pandora’s Box to Gattaca
The multi-billion-dollar industry in DNA testing (also referred to as “direct-to-consumer” or DTC genetic tests) is a Pandora’s Box that has unleashed a whirlwind of serious problems concerning individual privacy, data security, accuracy of results, racism, and discrimination—all of which will be discussed in this article.
Human DNA testing, that is not initiated by researchers and scientists, is usually done for the identification of:
• ancestry (ethnicity and geographic origin of ancestors)
• health (genetic-based diseases and other health problems)
• family relationships (locating previously unknown relatives and legal paternity testing)
• crime scene investigation (identification of criminals by law enforcement agencies)
Privacy & Security of DNA Data
Is DNA, ancestry, and health information private or protected? No, not at all. First, consumers should know that by using the DNA kits, the DNA results do NOT belong to you—they are the legal property of the vendors selling the kits (such as Ancestry, 23andMe, MyHeritage, and many other companies). Even though these DTC genetic testing companies do not analyze the DNA samples themselves (the testing is contracted to laboratories), the results still belong to the companies selling the test kit, and they can sell whatever they want. Moreover, customers’ saliva (spit) samples are kept by the companies for as long as 10 years, and even indefinitely. The “privacy” policies of DNA testing companies are carefully evasive. Privacy policies are not legal documents and are not binding on the company—these policies can change at any time and at multiple times, with no notice to consumers. (Download Vanderbilt University study of DTC-DNA privacy policies here: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3165765.)
All DNA-testing companies offer customers different options as to how and with whom they want their personal information shared with third parties. To confuse consumers, all companies use different language when describing these options for data-sharing and offer different options at different times in the customer sign-up process. Furthermore, the DNA-test providers are purposefully vague on identifying “third parties” such that, in the future, DNA results can be shared/sold to different companies from when a customer originally signed up, and those third parties may be able to re-sell DNA information to other companies or even share with government agencies. People have started to request that their DNA data be returned to them (or, in actuality, wiped off the company’s database). Since all DNA-testing companies offer different privacy options, requesting removal of DNA data is purposefully made difficult.
Privacy issues abound when the FBI wants access to DNA data. Law enforcement agencies have their own DNA databases of known criminals, but in 2018, police used a public genealogy website, GEDmatch, to arrest the Golden State Killer as well as more than a dozen other suspects. GEDmatch is open-source, meaning anyone can use it, and police were able to upload crime-scene DNA data and search the records without permission. Also in 2018, police searched Ancestry.com for any male relative of a deceased suspect in the 1969 rape and murder of Harvard student Jane Britton and obtained fresh DNA samples from his brother. The privacy violation involves not just the single suspect, but all family members of that individual are equally exposed (the Golden State Killer was identified through third and fourth cousins who had already submitted DNA tests). In 2019, the FBI gained access to two million additional genetic profiles, courtesy of FamilyTreeDNA—the first time a DTC DNA-testing company has voluntarily given law enforcement access to its customers’ data. The FBI now has double the amount of DNA data, together with its access to GEDmatch.
In the U.S., the Health Insurance Portability and Accountability Act (HIPAA) sets the standard for protecting the privacy of people’s medical information. Any person, business or contractor providing treatment, payment, testing, and operations in healthcare must have security measures in place to ensure HIPAA compliance. However, DNA-testing companies have taken advantage of a vast loophole in federal law: Even though they are collecting and testing DNA for assessments of health and disease risk (which constitutes medical information), the DTC DNA-testing industry and its contracted laboratories are not subject to HIPAA, because these tests are being ordered by the general public and not by health care providers or medical professionals.
Some privacy policies state that DNA results are agglomerated (combined) with other people’s results, so that a person’s individual identity is “anonymized” (or, made anonymous). Anonymization is done usually by removing personally identifiable information (e.g., name, address, zip code). However, there have been numerous successful attempts to reverse this process and re-identify large populations of people with their anonymized data—no special information or technical expertise is required, only access to a database is needed. Prof. Latanya Sweeney—the “Ralph Nader” of data privacy and whose research was the basis for HIPAA legislation—was easily able to combine state-government “anonymized” data with voter registration records (which she purchased for $20!) to reveal medical information about then Massachusetts Governor William Weld. Sweeney was also able to show other ways of re-identifying individuals with their supposedly anonymized information. The ease of re-identification exposes all DNA-testing companies to significant liability by virtue of having sold or shared DNA information to third parties, who in turn can re-identify individuals. No consumer should have any expectation of privacy.
How secure is ancestry and health DNA data? Selling DNA data and providing access to DNA databases are still the largest breaches of security that has already occurred. But what happens if the DNA database is breached (by disgruntled employees, ransomware, or outside hackers), held for ransom, or sold clandestinely? With leaks or hacks, your DNA data can end up being used anywhere in the world, even hypothetically by Chinese drug manufacturers. Since security at DNA-testing companies is open to question, it must be assumed there are few security measures against data theft.
DNA as A Marketing Tool
Any company in the U.S.—whether solvent, sold, or in bankruptcy—can sell or otherwise share your DNA information with anyone it chooses. GlaxoSmithKline has made a $300 million investment in 23andMe, which is allowing the pharmaceutical company to use the entire genetic database of 23andMe and its customers’ private information. In 2019, 23andMe also sold genetic data from millions of customers to other pharmaceutical manufacturers—Pfizer, Genentech, Biogen, and Alnylam Pharmaceuticals—so that these companies can develop new drugs and reap astronomical profits from the DNA that customers volunteered and paid to provide!
DNA testing companies are aggressively selling other types of products and services to their customers—23andMe is even trying to sell vacations to customers based on their DNA ancestry data. When customers sign up for DNA testing, many companies include a questionnaire about the customer’s habits, health, and other personal information that is then shared with more companies. Some of this information may help DNA interpretation; however, corporations are primarily interested in analyzing customers’ answers to sell other products and services.
In addition to “Big Pharma”, 23andMe also shares and sells customers’ DNA data to manufacturers of over-the-counter medications (e.g., Pepto-Bismol), as well as to manufacturers of other types of products (e.g., Pantene shampoo, Crest toothpaste, Ivory soap, and Bounty paper towels). It is unknown whether these manufacturers have bought access to DNA databases for the DNA information itself or for the equally valuable personal and contact information of its customers. Consumers should especially avoid so-called “lifestyle” DNA tests whose claims are nothing more than sheer quackery—such as identifying athletic talent in children or determining which foods and nutritional supplements you should buy. These DNA testing companies exist solely as marketing mechanisms for other products.
You Get What You Pay For: Are DNA Kit Results Accurate?
DNA testing for cultural ancestry and genetic disease risk raises the important issue of accuracy. Looking at accuracy from a different angle: Did you ever wonder why these DNA kits are relatively affordable and how companies are even able to test the DNA of millions of customers? The actual testing of samples is not done by companies like Ancestry or 23andMe, but by laboratories (like Counsyl in South San Francisco). The labor required to do the testing has been completely mechanized and done by robots—watch this video of how robots do the work: https://www.wired.com/2016/08/inside-robot-run-genetics-lab-tomorrow-just-watch-step/. Counsyl does hire live, human scientists to evaluate data; however, in order to keep customers’ costs affordable, most of the analysis to identify geographic origin of ancestors and genetic-based diseases is done using software.
Computers can make frequent and strange mistakes, with infamous cases such as identical triplets receiving three different DNA profiles or an individual who took nine different ethnicity tests and received six different results. The Internet is replete with hundreds of articles describing serious errors in DTC genetic tests for ancestry, inherited disease risk, and—yes—even paternity. Unfortunately, even with innumerable cases of errors, these DNA test kits are still very popular and the genetic-testing industry is making far too much profit to be bothered with correcting or even caring about errors.
False positives from health DNA tests have been reported as high 49%—that means one out of every two customers are being misdiagnosed as at risk for genetic-based diseases! Women, especially, are at great risk to consider radical surgeries, such as mastectomies and hysterectomies, based on information from DNA tests. (See: https://www.huffpost.com/entry/home-genetic-test-false-positives_n_5ac27188e4b04646b6451c42.) In April 2017, the U.S. Food and Drug Administration (FDA) gave 23andMe approval to sell DNA test kits to identify the customer’s risk for ten health conditions, including Parkinson’s disease and late-onset Alzheimer’s disease. In 2018, the FDA gave additional approval to 23andMe to sell tests to identify risk for breast cancer. However, the FDA approved testing for only three mutations in the genes BRCA1 and BRCA2, genes linked to breast cancer among Ashkenazi Jewish women, when there are actually more than 5,000 different mutations documented for just these two genes in the general population. 23andMe rushed to get FDA approval for any test for breast cancer—which begs the question, why did 23andMe go to great lengths for such a limited test? The women’s health market is vast and lucrative, and 23andMe may have created pent-up demand among women of all backgrounds for more expansive DNA tests. But be warned: The potential for mistakes in commercial DNA tests for breast cancer is just too high, and women must consult medical professionals for acceptable ways to detect disease risk!
DNA & Discrimination
After having arrived in Central and Eastern Europe a thousand years ago, a significant part of the Jewish population became physically segregated into rural villages and small towns (such as shtetls) or larger urban ghettos. With Jewish law requiring marriage with other Jews, bans against marriage with close relatives, and social isolation of the population, the number of available marriage partners becomes limited. Centuries of community inbreeding (or endogamy) resulted in what is known as the Ashkenazi problem—a high percentage of DNA now shared among Jews of European origin. Over the past 20 years, DNA analysis of ancestry, relatedness, and geographic origins has been conducted on the Jewish diaspora worldwide, and a specific variant on mitochondrial DNA, inherited from the mother, has been identified among Ashkenazi Jews.
In 2019, the Israeli newspaper Haaretz, reported that the Chief Rabbinate, the highest religious authority in Israel, was requiring DNA tests of mitochondrial DNA to confirm Jewish ancestry before issuing some marriage licenses. Israel has a dual legal system, with both civil and religious courts, each presiding over certain areas of the law. Religious courts have exclusive control over marriage laws, and Jewish couples are required to document Jewish identity to the Rabbinate. (There is no civil marriage in Israel, which forces non-Jews who want to marry Jews to fly to Cyprus to get married.) According to demographer Sergio Della Pergola, there are roughly 14 million Jews worldwide, using a religious definition, but over 23 million people are eligible for Israeli citizenship under the Law of Return. The Rabbinate’s requirement for DNA testing keeps a large segment of the population in legal and social isolation—eligible for immigration and citizenship, but ineligible to marry legally, be buried in a Jewish cemetery, or belong to a synagogue.
According to Orthodox tradition, Jewish ancestry is inherited through the mother, and the documentation for legal marriage usually involves showing a mother’s birth or marriage certificate. Many immigrants to Israel come from countries, such as the former republics of the Soviet Union, where documentation may be impossible to obtain. When they cannot provide the required proof, immigrants must contact rabbis where they were born or find records to prove their female ancestors were Jews. In 2018, numerous immigrants born in the former Soviet Union were asked to take DNA tests to prove Jewish ancestry. Out of approximately a million Russian-speaking Israelis, hundreds of thousands are not considered Jews by the Rabbinate. The general perception is that immigrants from the former Soviet republics cannot be assimilated. By consistently having their Jewish ancestry questioned, the Russian-speaking Israelis are being subjected to targeted and scientifically-based discrimination. Tragic situations of religious discrimination have been reported in The Guardian: One man had to get a saliva sample from his grandmother who was sick with dementia. A woman had to ask both her mother and aunt for a sample to prove she was not adopted. Another woman received an official demand for a DNA test—even though she had been married in a Jewish ceremony almost two decades earlier; if she did not comply, she would have to sign papers declaring she is not Jewish. The Rabbinate has blithely ignored public protests in Tel Aviv as well as criticism in both the Israeli and Western press.
Ironically, the Rabbinate requirement to document Jewish ancestry is reminiscent of the Ahnenpass (ancestor “passport”) issued by the Reich Association of Marriage Registrars in Germany (Reichsverband der Standesbeamten in Deutschland e. V.) during the 1930s and 1940s. The Ahnenpass recorded German ancestry and Christian religious affiliation going back at least two generations from official birth and marriage documents. The Law for the Restoration of the Professional Civil Service, issued on April 7, 1933, required all public servants to be of “Aryan” descent, and the scope of the law was later enlarged to include lawyers, teachers, medical doctors, as well as requiring a proven German ancestry even to attend high school or to get married. Some clergy members helped many individuals (including this author’s grandmother) by providing them with fake documents and passports as personal documentation necessary for surviving the Third Reich. An example of an Ahnenpass from a German immigrant family in Australia can be seen in the collections of the Victoria Museums, Australia: https://collections.museumvictoria.com.au/items/1323300.
Most concerning is how direct-to-consumer DNA testing is being used worldwide for ethnic, religious, and political discrimination: In the United States, the leader of the Ku Klux Klan (KKK) is heralding the DNA test to define Jews. In Greece, the neo-fascist Golden Dawn party uses research on Greek DNA to demonstrate 4,000 years of racial continuity and ethnic supremacy. In Australia, the far-right One Nation party has suggested that First Nations (Aboriginal) people be given DNA tests to demonstrate how indigenous they are before receiving government benefits. Also, China is using DNA testing to identify who is of Uighur ancestry, as part of the government’s campaign of surveillance and oppression of the Muslim minority.
Gattaca Revisited: Genetic Citizenship & Biopower
The 1997 science fiction movie Gattaca (whose title derives from the components of DNA: guanine, adenine, thymine, and cytosine) portrays a regime of biopower in the near future where children are designed with “perfect” DNA through eugenics. The film correctly depicts genetic science and genetics in CSI and received excellent reviews from critics; but, unfortunately, box office returns were poor. The film was made before DTC DNA testing became available, and it is possible that the public might not have grasped the likelihood of human genetic engineering, or the film’s prediction of genetic profiling and genetic discrimination (that is now evident worldwide). It would be interesting for Gattaca to be shown again, now that governments are categorizing the biological citizen at the molecular level. Gattaca foretells discrimination that is just on the horizon. In the film, two types of people are shown: those created through eugenics (“valids”) who have access to education and economic opportunity, while others resulting from normal human conception (“in-valids”) are relegated to lower levels of employment. Companies like Ancestry and MyHeritage have made the dangerous decision to create combined databases of both family ancestry and DNA information. Will employers and insurance companies buy access to both types of data and trace a person’s genetic defects to descendants? Will your children and grandchildren be denied a good job or health care because they have a relative with genetic health risks?
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