Difference between revisions of "Ancestry data"

Revision as of 14:23, 7 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.

Modern day technology has changed the way we collect and interpret ancestry data. Companies like 23andMe and AncestryDNA offer full ethnic background maps and potential family tree links directly to the general public. The thriving direct-to-consumer (DTC) ancestry data industry originates from a fascination with who we are and where we are from. It has ushered in a new form of personalized medicines and treatment plans based on our genetic makeup. As of 2014, genealogy (the study of genetics) was a 2-billion-dollar industry and growing.^[1] These new companies have made it 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, scientists have worked tirelessly to better understand DNA, as well as the human genome and its many implications. The Human Genome Project, the first full human DNA sequence in history, cost almost $3 billion.^[2] We have come so far that for under $100 an individual can get their DNA sequenced and analyzed for personal use.

How Ancestry Data Works Today

It is very simple for a person to receive their ancestry data. Simply purchase a kit from a direct-to-consumer DNA testing company like 23andMe, follow the DNA harvesting directions (i.e. spit into a small plastic tube), and then send it back to the company. Once a DNA sample is received, the company will process and sequence the DNA. With the help of trained professionals and algorithms, DNA sequencing can provide information that can change 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]" ^[3]. DNA sequencing (for the purpose of ancestry data) is also able to recommend potential relatives based on near complete matches of DNA - and boasts very accurate results for those considered “Close Family” or “First Cousins”.

23andMe Logo

Technology advancements have made it extremely easy for us to grasp the full power of our genes and truly figure out who we are. But, like all things evolving 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. The most popular is Ancestry.com because user's have access to many of the features without purchasing a membership. But with a membership, user's may access significantly more features of the website. The best value is Family Search's because it is very in depth free of charge. If a user is looking to receive their results very quickly, MyHeritage is a better option. The DNA test kit services they provide are delivered and processed very quickly. Archives is another website, but this one is most useful for users who already 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 ^[4].

Benefits of Using Technology

23andMe takes using genealogy to the next level. They offer more than 100 different tests that offer more information about personal health. 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 ^[5].

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 ^[6]. 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 ^[7]. This is becoming an increasingly common method for law enforcement, which has lead to a more efficient way to find people harming a 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

Similarly to how 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 ^[8]. Deals such as this share our extremely personal data with organizations for research purposes, 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. Unintentional sharing is also very common and it is an extremely unsettling feeling for users ^[9]. All the data is anonymized however, but that data is our genetic makeup, which is just as personal as 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 ^[10]. To combat the potential consequences found with how ancestry data is used today, it is important to give people 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. They do offer this feature later on, but it is extremely difficult to find.

There are also issues regarding the release of DNA to law enforcement. Currently, websites like Ancestry.com and 23andMe have been utilized 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. In Carolyn Crist's article, she urges users to understand that once their DNA is uploaded, it can be used by law enforcement. ^[11]

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^[12], 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.^[13] 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.^[14] 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.^[15] 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.^[16] 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. ^[17]

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^[18]. 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.^[19] 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.^[20] 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. ↑ [1]
3. ↑ 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.
4. ↑ Top Ten Reviews. “https://www.toptenreviews.com/services/home/best-genealogy-websites/.
5. ↑ 23andMe. “Our Health + Ancestry DNA Service.” 23andMe, www.23andme.com/dna-health-ancestry/.
6. ↑ 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/.
7. ↑ 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.
8. ↑ 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.
9. ↑ 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.
10. ↑ 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.
11. ↑ 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.
12. ↑ 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.
13. ↑ Ryan, Allison, et al. "Informatics-based, highly accurate, noninvasive prenatal paternity testing." Genetics in Medicine 15.6 (2012): 473.
14. ↑ https://www.youtube.com/watch?v=wTZHW7JCSuA
15. ↑ https://www.pbs.org/newshour/science/white-supremacists-respond-genetics-say-theyre-not-white
16. ↑ Floridi, L. Ethics Inf Technol (2005) 7: 185. https://doi.org/10.1007/s10676-006-0001-7
17. ↑ 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.
18. ↑ 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.
19. ↑ 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.
20. ↑ Wallace, K.A. Ethics and Information Technology (1999) 1: 21. https://doi.org/10.1023/A:1010066509278