Ancestry data

The current family tree of British Royalty

Ancestry data is collected information tracking an individual's family lineage to identify their ethnic origin, heritage, place of birth, and relatives. For thousands of years, records of ancestry data have been kept to clearly define concepts of birthright and successions in both modern and ancient civilizations.

Modern day technology has changed the processes of collecting and interpreting ancestry data. Companies like 23andMe and AncestryDNA offer full ethnic background maps and potential family tree links to the general public. This thriving direct-to-consumer (DTC) ancestry data industry originates from a fascination with the concept of human identity and origin. The industry's success has lead to a new form of personalized medicines and treatment plans based on genetic makeup. As of 2014, genealogy was a 2-billion-dollar industry, and is continuing to grow. These new companies have made it affordable and efficient for the general public to discover more about themselves in terms of ancestry. However, as ancestry data is applied to health care solutions, a range of ethical problems, including racial supremacy, health, and privacy, emerge.

Modern Day Use and Influence of Technology

Since the discovery of the double helix by Francis Crick and James Watson in 1935, scientists have worked tirelessly to better understand DNA, the human genome and its countless implications. The Human Genome Project, the first full human DNA sequence in history, cost almost $3 billion. In contrast, with today's technological advancement, an individual can get their DNA sequenced and analyzed for personal use through a variety of popular venders for under $100.

How Ancestry Data Works Today

With the modern popularization of discovering familial lineage online, it has become incredibly simple for a person to receive their ancestry data. Consumers simply purchase a kit from a direct-to-consumer DNA testing company, such as 23andMe, follow the DNA harvesting directions (i.e. spit into a small plastic tube), and send the completed test kit back to the company. Once a DNA sample is received, the company will process and sequence the DNA, which in the case of 23andMe, takes 3-5 weeks. With the help of trained professionals and algorithms, DNA sequencing can provide information that changes lives. Robin Smith, head of 23andMe’s Ancestry program explains how the algorithm works: "it takes an entire genome and chunks it up...It takes little pieces, and for each piece, it compares it against the reference data set. It compares it against British; it compares it against West African; it goes through the entire list, and it spits out a probability for [where that piece of DNA came from]" . DNA sequencing also has the capability to speculate potential relatives based on near complete matches of DNA, and boasts very accurate results for those considered “Close Family” or “First Cousins”.

23andMe Logo

Overall, technology advancements have made it relatively easy for the general public to grasp the full power of their genes and find identity through genetics and heritage. With that being said, there are great benefits and consequences; technology has allowed the applications of ancestry data to become far more contentious.

Genealogy Websites

There are many different direct-to-consumer personal genomic websites that allow individuals to receive a report of their ancestry data. The most popular is Ancestry.com, because users are able to access many of their offered features without paying for a membership. Though with a membership, users benefit from unlimited access to the website's numerous features. The best value for a consumer is Family Search, because it offers a comprehensive sequencing and analysis, free of charge. However, if a user wishes to receive their results immediately, MyHeritage can be considered a better option, as this DNA test kit service is delivered and processed quicker than the other service options. Other websites like Archives offer more detailed information for users who are already familiar with genealogy. FindMyPast is a great place to start for beginners, because it provides easily digestible and actionable data.

Benefits of Ancestry Data

23andMe offers over 100 tests that provide consumers with a variety of personalized health data. For example, you can discover what dominant traits will be passed down to offspring, what genes do and do not effect your well-being, and what foods you should and shouldn’t eat . 23andMe has used their ancestry and DNA data banks to aid in research as well. For example, a study done by Dr. Abraham Palmer and his team at the University of California, San Diego School of Medicine used over 20,000 consenting 23andMe users to determine that there is a connection between impulsiveness and drug use in humans . Other studies have identified many genes related to depression and other mental illnesses.

In popular culture, DNA testing databases were leveraged in order to capture the Golden State Killer. Law enforcement used DNA profiles from ancestry sites to catch and identify the killer by first locating his relatives . This is becoming an increasingly common method for law enforcement, which has lead to an innovative and more efficient way to track down criminals.

Consequences of Ancestry Data

Just as Facebook and other social media platforms sell and share user data with their partners, 23andMe has been known to do the same with pharmaceutical companies (e.g., a $300 million-dollar deal with GlaxoSmithKline ). Direct-to-consumer companies essentially give away extremely personal (and private) genetic information to organizations for research purposes, among other reasons.

Once the DNA data and ancestry data has been processed, it is almost impossible for the data to be removed from the site. Unintentional sharing is also very common which often generate discomfort or distrust among customers. . Even though all genetic information is anonymized - and (apparently) cannot be traced back to its owner - it should be protected as if it were each customer's social security number.

Norman Mooradian’s states in his paper “Importance of privacy revisited”, that people should be able to control or restrict the access of information . To combat the potential consequences associated with the ways in which ancestry data is utilized today, it is important to give people the power to decide where their genetic makeup goes. AncestryDNA does offer an opt-in/opt-out feature for sharing information for research purposes when users first sign up, though it is rather difficult to find. Clearly, these companies value their ability to share or sell genetic information.

There are also issues regarding the release of DNA to law enforcement. Currently, websites like Ancestry.com and 23andMe have been employed by law enforcement in order to solve criminal cases. Most users of these companies discover simple things, like if they have European heritage, but have no idea that they are subjecting their DNA to use by law enforcement. Carolyn Crist warns consumers in her article that once their DNA is uploaded, it can be used by law enforcement.

Ethics

Ethical questions about ancestral data can arise due to the uncertainty that exists regarding how consumer data gets handled and how secure that data actually is. Without regulation, there are a number of ways in which companies can use customer's ancestral data for financial or market gain. In some cases, the incentive for large corporations to take advantage of user's data for financial gain poses some ethical dilemmas, primarily with in the case of maintaining user privacy.

Utility of Genetic Data

Genetic modeling companies, like 23andMe, promote their services to decipher individuals' genetic codes for healthcare related services, and to better understand individual biological functions. 23andMe offers Health+Ancestry product package, which aside from providing ancestral genealogical information, provides information on "Health Predispositions," "Wellness," and "Traits." This packaged service will provide information on "how your genetics can influence your chance of developing certain health conditions," "how your genes play a role in your wellbeing and lifestyle choices," and " how your DNA influences your facial features, taste, smell, and other traits." Genetic modeling advertising implies that it can provide personalized healthcare and behavioral analysis based on the genetic data it collects on its consumers. A 2014 Oxford University study has found that only 8.2% of human DNA has any functionality. That implies that over 90% of human DNA has no functional role to play in human biology. Much of that DNA, according to the study, is simply genetic "baggage" that is carried over from human to human throughout generations. Genetic modeling companies that market individualized information on healthcare and traits, may be deceiving consumers by claiming to offer falsely overly-personalized products.

Health Implications

23andMe is one of the leading companies in online ancestry data with an aim that goes beyond processing customer's DNA for ancestry data; it also analyzes DNA to create insightful health reports for each customer's personal genome. The main DNA tests done through 23andMe provide guidance to the customer through the means of dietary suggestions or the restrictions of certain foods and valuable insight about the increased potential for disease risk within the customer's DNA. In a recent article in The Scientist, Prof. John Loike claims that some of these DNA tests are not as accurate as they are perceived to be. Loike supports this claim by pointing out that 23andMe DNA test only account for 3 of the most common BCRA mutations, the mutations that are commonly used to predict breast cancer. Although 23andMe has DNA testing that addresses the 3 most common mutations, there are over 1000 BCRA mutations that a typical genealogy lab would test for. Some insurance companies are even curious to know whether or not you've taken genetics or DNA test because then they could know if later down the line you could have a genetic condition or illness, that in the end will cost the company more money.

Paternity Tests

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A reddit post from April 19, 2019 shows a user suggesting the family of an unknowingly adopted child buy DNA test kits "and watch the world burn"

DNA tests that reveal ancestry may also create issues as it relates to relationships with children. A mother may have a child that looks dissimilar to the purported father, creating tension between the parents over whether or not he is the biological father. Paternity testing have close to 100% accuracy, however, there is still the possibility that the test may yield false negatives which may impact getting necessary child support for a child.

On television shows such as the American talk show Maury, couples are brought on to dispute and either verify or disprove the paternity for fatherless children. This may yield surprising results, such as a father with African ancestry having fair skinned children. With DNA tests, people can be humiliated in public and sensationalize ancestry that is otherwise information people would keep more private. This brings up ethical issues of whether or not these tests should be used for public display and theatrics because of how embarrassing they can be for individuals.

Reddit has a subreddit called r/23andMe that is dedicated to discussing users' test results when they come back from 23andMe DNA test kits. While this has fostered fruitful conversation and better information amongst users, the subreddit has also turned into a part-time hub for stories of DNA test kits tearing families apart. The subreddit regularly features stories of users whose tests have revealed infidelity, untold adoption, and other issues that cause rifts amongst families.

White Supremacy

One of the many claims made by rising white supremacy groups suggests that possessing pure European ancestry is the mark of superiority, and many individuals within these groups have used ancestral DNA testing as a form of validation in establishing their connection to the supposed superior ancestry. In some cases, white supremacists get results that suggest fully white European ancestry and they react with relief and celebration. Others white supremacists have taken DNA tests only to find out that they're not "pure" white, which causes them to generally discount the test results instead of re-evaluating their views on genetic hierarchies. They usually attribute non-white results to be statistical error or affirm that family trees are the only evidence needed to prove white ancestry. Some extreme reactions include accusing Jewish people of conspiring to sabotage. This is ethically challenging because tests by nature are not always accurate, and push forth ideas and interpretations that are false. In any case, DNA tests may create ammo for hate-based groups to spread their ideologies.

Privacy Implications

Leading ICT ethicist Luciano Floridi argues that the right to privacy is the right to a renewable identity. A notion that is contradicted by how contemporary ancestry data aggregators sometimes use customers' biological data without their knowledge (as discussed earlier). Recently, Danielle Teuscher had used a sperm donor to have a child and had her daughter and other members of her family take an ancestry test through 23andMe. While Danielle had not intended to find the family of her daughters donor, a woman who was not her mother was linked to her daughter as her Grandmother. Danielle decided to reach out to her donors mother. The Sperm Bank had caught word of her reaching out, which breached their pledge to keep the donor anonymous from Danielle and her daughter, and is pursuing potential legal action. While it is in no part 23andMe's fault, ancestry data has played a large part in the ethical implications of this story as well as others.

Moreover, ancestry data has shed light on aspects of peoples traits that they weren't even aware that they had. Bob Hutchinson used a DNA test kit wanting to prove his heritage, however he discovered so much more. Mr. Hutchinson's mother had never said much of her family other than that they were of Italian and Swedish descent, but through the tests he learned he had African American roots. Knowing this, he worked to identify some of his relatives, whom had been told to never contact Mr. Hutchinson or his family. While it opened a new world for him, it also broke some of the ethics that the respective families followed, even if they felt they were wrong. Similarly, many people are concerned that utilizing these services will eliminate the privacy of your DNA, but it is in the interest of companies like 23andMe to keep your data private. The future of their companies relies on trust with customers. The main issue is, DNA, like one's Iris is unique to an individual.

Hacking

Because of the uniqueness of DNA, hacking is a large concern. In October 2017, there was a MyHeritage breach which leaked millions of personal account details. The hack became evident because of a private server, which included email addreses and hashed passwords. Because the data is so private and MyHeritage understands that the trust with the consumers is extremely coveted, they keep several different servers of data. MyHeritage was lucky that it was only account details that were leaked, but this breach is evidence of the immense privacy concerns associated with Ancestry data.

Conclusion

As demonstrated, ancestry data has been a catalyst for many different ethical concerns. Whether it has been used to interpret medical data and allowing law enforcement access to our data, to circumnavigating privacy rules of sperm banks, it had caused some unsettling feelings for many people. It is clear that in some instances the information is used to uphold the moral good, but the underlying concerns demand more discussion. One way to ensure people's privacy, proposed by Kathleen Wallace, is to use the idea of traits, such as gender, age, Social Security Number, and more as the defining qualities of that make up our anonymity. When some of these traits are hidden from public knowledge, these people are consider to be anonymous to an extent. Another way might be to have more regulations on how companies should state clearly the possible ways they will use the data besides genealogy purpose and how they should ask informed permissions before actually using the data. Senator Chuck Schumer warns that privacy concerns are not made clear enough to consumers. Consumers most private information could potentially be sold to third parties, requiring an investigation by the federal trade commission.