Ancestry data

The current family tree of British Royalty

Ancestry data is information that has been collected for centuries on people’s ancestry, namely a person's ethnic origin or heritage, where they were born, and who they are related to. Records of this data have been kept for thousands of years to clearly define concepts of birthright and successions in both modern and ancient civilizations.

For example, the longest surviving family tree to be recorded is that of the Imperial House of Japan. Since 660 BC, the decedents of Emperor Jimmu have been documented all the way to present day, detailing the appropriate line of succession.

Modern day technology has changed the way in which people care about ancestry data. Companies like 23andMe and AncestryDNA have made it cost-effective and efficient to get a full ethnic background map and potential family tree links we didn’t know existed. This new form of Ancestry data grew out of people’s fascination with wanting to know who they were, where they are from, and what they are made of. It has ushered in a new form of personalized medicines and treatment plans based on our genetic makeup. As of 2014, genealogy or the study of genetics was a 2-billion-dollar industry and growing . Now, it is affordable and efficient for people to discover more about themselves and their ancestry.

Modern day use and influence of technology

Since the discovery of the double helix by Francis Crick and James Watson in 1935, we have tirelessly looked to better understand human DNA and the human genome. We have come so far that for under $100 you can have your DNA processed and analyzed to help tell you exactly who you are.

How it works today

For a person to get their ancestry data, there are only a few steps. Simply order a kit from a company like 23andMe, follow the DNA harvesting directions (i.e. spit into a small plastic tube), and then send it back to the company. However, there is much more that is handled on the ancestry company’s end.

Once a DNA sample is received by an ancestry company like AncestryDNA or 23andMe, they begin to process and sequence the DNA. DNA is made up of 4 nucleobases represented as C, G, A, and T. Once sequenced, there is will be just a long string of those letters that means basically nothing to the naked eye. Robin Smith, head of 23andMe’s Ancestry program said it works like this, “the way that the algorithm works, it takes an entire genome and chunks it up," Smith said. "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]" . It is also able to recommend potential relatives based on near complete matches of DNA with very accurate results for those considered “Close Family” or “First Cousins”.

23andMe Logo

Technology and advancement have made it extremely easy for us to grasp the full power of our genes and truly figure out who we are. Like all things improving through the use of technology, there are great benefits and consequences.

Benefits of using technology

Aside from learning more about your ancestry, 23andMe takes using genealogy to the next step. They offer more than 100 different tests that tell you more about your health. You can discover what dominant traits you have to pass down to your offspring, what genes effect your well-being and which don’t, 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 people . Other studies have identified many genes related to depression and other mental illness as well.

One of the more popular claims to fame is the capture of 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 is definitely a great thing to find people who are a harm to society.

Ancestry data has developed into a much broader meaning with the influence of technology. However, like most things that advance and improve from technology, there are negative consequences.

Consequences of using technology

Much like Facebook and other social media sell and share our data with their partners, 23andMe does the same thing, but with big pharmaceutical companies, like their $300 million-dollar deal with GlaxoSmithKline . Deals such as this grant our extremely personal data to organizations to do research among other things.

Once the DNA data and ancestry data has been processed, it is almost impossible for the data to be removed from the site, if a user ever wishes. Leaks are also very common and it an extremely unsettling feeling for users . All the data is anonymized however, but that is data on our genetic makeup, which is just as personal as say a 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 found with how ancestry data is used today, it is important to give people the option. AncestryDNA does offer an opt-in/opt-out feature for sharing information for research purposes when users first sign up. They also do offer the same feature later on, but it is difficult to find. This feature is a great example of being able to control exactly how the data is shared and controlled.

In addition to the danger of peoples' DNA data being released to big pharmaceutical companies, there are issues regarding the release of DNA to law enforcement. Currently, websites like Ancestry and 23andMe have been dipped into by law enforcement in order to solve cases. Most users of these companies to find out simple things, like if they have European heritage, have no idea that by submitting their DNA they are subjecting it to use by law enforcement. In Carolyn Crist's article, she urges users to understand that by uploading their DNA, it can be subject use by law enforcement

Ethics

As stated in the previous information, we have seen some of the ethical implications of how ancestry data companies use our data. Such as sharing with pharmaceutical companies to help them create better and more personalized drugs as well as using the data to find criminals who are still at large. However, there exists more implications on health and privacy ethics.

Health Implications

On the health side ancestry data, 23andMe is one of the leaders. As stated earlier, 23andMe not only processes your DNA for ancestry data, but also looks into your DNA and what that means for your health. Many of the tests they provide give people insight into what they should and shouldn't eat, what potential disease risks you might, and more. In a recent article in The Scientist, Prof. John Loike shed light on how some of these tests are not as accurate as you may hope. In one instance, he pointed how the company only tests for 3 different BCRA mutations, the mutations that are common for predicting breast cancer. Given these are the 3 most common mutations, but there are over 1000 BCRA mutations that a typical genealogy lab would test for.

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 their users' biological data. In the summer of 2018, police used a free ancestry data service called GEDmatch to catch the notorious "Golden State Killer", a man who police believe raped 45 women and killed 12 women. A distant relative of the killer submitted their dna sample with the intention of finding out about their familial history, but the police were instead able to use the data to narrow the list of suspects to one family tree, ultimately culminating with arrest of the suspect. It is clear in this instance that the information was used to uphold the moral good, but there are underlying concerns of information ethics as they pertain online privacy and the consent of the user.

(I, Hagan, didn't write the above but I have written the following, which I admit is late).

Kathleen Wallace uses 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. This idea of hiding traits is also a core principle of Sperm Bank and sperm donation operations.

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.

In another case, tests like 23andMe have 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 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.

As demonstrated, ancestry data has been a catalyst for many different ethical concerns. From how they have been used to under 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.