Difference between revisions of "Ancestry data"

Revision as of 01:02, 4 April 2019

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 ^[1]. 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]" ^[2]. 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.

Websites

There are many different websites that allow for people to receive their ancestry data. Ancestry.com is the most popular because many aspects of the website are free to use without having a membership. Once you have a membership you can access many more features of the website. From customer reviews, Family Search gives users the best value because it is very in depth and is free to use. If a user is looking to receive their results very quickly, MyHeritage is the best option. The DNA test kit services they provide are very quick. Archives is another website, but this one is most useful for users who know a lot about genealogy and want more in depth information. FindMyPast is a great place to start for beginners because it provides easy to use and understand data ^[3].

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 ^[4].

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 ^[5]. 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 ^[6]. 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 ^[7]. 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 ^[8]. 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 ^[9]. 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 ^[10]

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

23andMe is one of the leading companies in online ancestry data with an aim that goes beyond processing customer's DNA for ancestry data. 23andMe additionally analyzes customer's 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^[11], 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.

Paternity Tests

DNA tests that reveal ancestry also bring in another factor to relationships with children. A mother may have a child that looks dissimilar to the purported father, creating tension between the parents in whether the father is genetically related or not that gets exacerbated by the possibility of finding a link or absence of a link through genetic testing. Paternity testing is especially accurate with close to 100% accuracy.^[12] However, these are not always accurate and may yield false negatives which may impact getting necessary child support for a child.

On shows such as Maury, sometimes women are featured with men disputing genetic ties to a child. This may yield surprising results, such as a father with African ancestry having fair skinned children.^[13] With DNA tests, people can be humiliated in public and sensationalize ancestry that is otherwise an issue people would keep more private. This brings up ethical issues of whether or not these tests should be allowed to be public because of how embarrassing they can be for individuals.

White Supremacy

White supremacists claim that having European ancestry is superior, and have used Ancestral DNA test as a hopeful attempt to validate their connection to 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.^[14] This is ethically challenging because tests by nature are not always accurate, and push forth ideas and interpretation that are false. In any case, DNA tests may create ammo for hate-based groups to proliferate their ideas and become more embedded within their social circles.

Privacy Implications

Leading ICT ethicist Luciano Floridi argues that the right to privacy is the right to a renewable identity.^[15] A notion that is contradicted by how contemporary ancestry data aggregators sometimes use the users' biological data without their knowing it. 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. ^[16]

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^[17]. 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.^[18] 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. 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.^[19] 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.

References

1. ↑ amietennant. “The Genealogy Industry: $2 Billion–and Growing!” Genealogy Gems, 11 Dec. 2014, lisalouisecooke.com/2014/12/11/genealogy-industry-growing/.
2. ↑ Letzter, Rafi. “How Do DNA Ancestry Tests Really Work?” LiveScience, Purch, 4 June 2018, www.livescience.com/62690-how-dna-ancestry-23andme-tests-work.html.
3. ↑ Top Ten Reviews. “https://www.toptenreviews.com/services/home/best-genealogy-websites/.
4. ↑ 23andMe. “Our Health + Ancestry DNA Service.” 23andMe, www.23andme.com/dna-health-ancestry/.
5. ↑ 23andMe. “Genetic Study of Impulsiveness Reveals Associations with Drug Use.” 23andMe Blog, 4 Feb. 2019, blog.23andme.com/23andme-research/genetic-study-of-impulsiveness-reveals-associations-with-drug-use/.
6. ↑ Romano, Aja. “DNA Profiles from Ancestry Websites Helped Identify the Golden State Killer Suspect.” Vox, Vox, 27 Apr. 2018, www.vox.com/2018/4/27/17290288/golden-state-killer-joseph-james-deangelo-dna-profile-match.
7. ↑ Martin, Nicole. “How DNA Companies Like Ancestry And 23andMe Are Using Your Genetic Data.” Forbes, Forbes Magazine, 5 Dec. 2018, www.forbes.com/sites/nicolemartin1/2018/12/05/how-dna-companies-like-ancestry-and-23andme-are-using-your-genetic-data/#5d3ba70a6189.
8. ↑ Brodwin, Erin. “DNA-Testing Company 23andMe Has Signed a $300 Million Deal with a Drug Giant. Here's How to Delete Your Data If That Freaks You out.” Business Insider, Business Insider, 25 July 2018, www.businessinsider.com/dna-testing-delete-your-data-23andme-ancestry-2018-7.
9. ↑ Mooradian, Norman. “The Importance of Privacy Revisited.” Ethics and Information Technology, vol. 11, no. 3, 14 July 2009, pp. 163–174., doi:10.1007/s10676-009-9201-2.
10. ↑ Carolyn Crist, “Experts outline ethics issues with use of genealogy DNA to solve crimes” Reuters, 1 June. 2018, https://www.reuters.com/article/us-health-ethics-genealogy-dna/experts-outline-ethics-issues-with-use-of-genealogy-dna-to-solve-crimes-idUSKCN1IX5O6.
11. ↑ Loike, John. “Opinion: Consumer DNA Testing Is Crossing into Unethical Territories.” The Scientist Magazine®, 16 Aug. 2018, www.the-scientist.com/news-opinion/opinion--consumer-dna-testing-is-crossing-into-unethical-territories-64650.
12. ↑ Ryan, Allison, et al. "Informatics-based, highly accurate, noninvasive prenatal paternity testing." Genetics in Medicine 15.6 (2012): 473.
13. ↑ https://www.youtube.com/watch?v=wTZHW7JCSuA
14. ↑ https://www.pbs.org/newshour/science/white-supremacists-respond-genetics-say-theyre-not-white
15. ↑ Floridi, L. Ethics Inf Technol (2005) 7: 185. https://doi.org/10.1007/s10676-006-0001-7
16. ↑ Crist, Carolyn. “Experts Outline Ethics Issues with Use of Genealogy DNA to Solve...” Reuters, Thomson Reuters, 1 June 2018, www.reuters.com/article/us-health-ethics-genealogy-dna/experts-outline-ethics-issues-with-use-of-genealogy-dna-to-solve-crimes-idUSKCN1IX5O6.
17. ↑ Mroz, Jacqueline. “A Mother Learns the Identity of Her Child's Grandmother. A Sperm Bank Threatens to Sue.” The New York Times, The New York Times, 16 Feb. 2019, www.nytimes.com/2019/02/16/health/sperm-donation-dna-testing.html.
18. ↑ Kolata, Gina. “With a Simple DNA Test, Family Histories Are Rewritten.” The New York Times, The New York Times, 28 Aug. 2017, www.nytimes.com/2017/08/28/science/dna-tests-ancestry.html?module=inline%3C%2Fref%3E.
19. ↑ Wallace, K.A. Ethics and Information Technology (1999) 1: 21. https://doi.org/10.1023/A:1010066509278