Difference between revisions of "Genealogy platforms"

Revision as of 16:21, 24 April 2019

Genealogy platforms are online sites which are used to gather, organize, and present genealogical data or information regarding one's lineage. They allow users to trace their genealogy by providing family information (i.e. birth dates, marriage dates, etc.), submitting a DNA sample, or some combination of the two. These sites are often massive databases containing billions of records and family trees compiled from their own resources and that of users. While genealogical platforms provide users with interesting ancestral insights and the ability to trace relatives, several ethical concerns arise. To name a few, the results may not be entirely accurate or reliable - and users may, unknowingly, be handing over valuable personal information to platforms with little regulation (over how this data is treated).

Popular Genealogy Websites

Credit: Adam Westlake. "Ancestry.com leaked data on 300,000 users." 30 Dec 2017. Slash Gear.

• Ancestry.com: Ancestry.com (also known as AncestryDNA) is a privately owned company and the number one for-profit genealogy company in the world. Ancestry operates a network of genealogical, historical record, genetic genealogy websites. ^[1]
• 23andMe: Founded in 2003, 23andMe is a privately held company that provides customers with health-related genetic testing, and ancestry.^[2]
• Billion Graves: The largest platform for tracing cemetery data. Users contribute to the website by collecting headstone images from cemeteries and transcribing the personal information found on the images. ^[3]
• FamilySearch: The largest genealogy organization run by the Church of the Latter Day Saints. FamilySearch gathers, preserves, and shares genealogical records worldwide, and offers free access to its resources. ^[4]

How They Work

Research into genealogy is a complex practice that requires a vast database of records along with genetic testing in order to prove kinship. Conclusion of kinship is determined after the evaluation of historical records that indicate ancestral ties. Genealogists begin by working with present information and work backwards in time in order to create a cohesive family tree.

Records

The vast majority of the information compiled in genealogy platforms consists of digitized records. At a minimum, genealogy software prompts the user to enter the date and place of an individual’s birth, marriage, and death, and stores the relationships of individuals to their parents, spouses, and children. As genealogy platforms have grown more popular and successful, they have grown to accommodate less common relationships that previously were not accounted for. Examples include children born out of wedlock, unorthodox spousal relationships, etc. ^[5]The platform builds a family tree from the information the user has provided, but also accommodates and encourages the inclusion of details from an individual's life: notes, photographs and multimedia, as well as source citations. This helps provide future users with a more detailed picture of the people in the family tree, and also increases the chances of a user recognizing the information of an individual as something which links them to their own family tree.

Once a user has entered as much information as they can, the platform will search their own vast databases for entries of individuals, families, or documents which are likely to be connected to the user. This may lead a user to unknown information about their family - sometimes unseen photos or records of education or employment - or even unknown relatives and ancestors. Many platforms allow matches to contact each other through the site's instant messaging functionality. Granted, there is still some sense of anonymity in case one user does not want to be contacted by a distant relative (i.e., user names, not responding to messages). Nevertheless, users do appear on a list of genealogical matches. Genealogy software programs can produce a variety of graphical charts and text reports, such as pedigree charts, Ahnentafel reports, and Register reports^[6] which can help a user make sense of the information provided to them Some platforms include additional fields relevant to particular religions. Others focus on certain geographical regions. For example, having a field for the family's coat of arms is only relevant if the family comes from a part of the world that uses them.

DNA

To supplement their records many platforms use DNA tests. DNA Testing takes a special interest in the specific locations of a genome which relate to genealogy. A DNA sample helps to both find and verify ancestral genealogical relationships,^[7] leading users to new relatives or ancestors. Some platforms also estimate the ethnic/geographical origins of an individual, providing information on when and where a user’s family moved and speculation as to why they might have moved based on historical events. Some platforms will also provide insight into a user’s traits (such as freckles, aversion to cilantro, etc.). ^[8] This allows users to compare traits with relatives, learn the ethnic origin of the trait, and who in their family may have contributed to the prevalence of that trait in them.

There are three major types of genealogical DNA tests:

• Autosomal DNA tests estimate Ethnicity by looking at chromosomes 1-22 along with the X chromosome. Chromosomes 1-22 are inherited equally by both parents and can even be traced to older generations of grandparents.
• Y-DNA tests explore the paternal line by looking at the Y-chromosome directly inherited from father to son.
• mtDNA tests explore the material line by looking at mitochondria which is directly inherited from mother to child.

Volunteerism

A significant part of genealogy platforms occurs from volunteerism. Many projects in genealogy require collaboration in order to create and manage a sufficient database of records. A major project in genealogy occurs from the need to prepare indexes for search records in order to locate original records. Along with this, volunteers maintain libraries of information for public use, provide research assistance to those looking for family histories, preserve records, take pictures of graves and submit them to sites, and even teach genealogy^[9].

Benefits

Personal

Genealogy platforms have recently become popularized due to the high demand of individuals searching for information on their ancestry. Along with the search for information, genealogy platforms present individuals with the ability to revise and complete the test at home. After sending the test back, results on genealogy can be received back in a matter of weeks. In short, genealogical testing methods are efficient and convenient for consumers; for this reason, direct-to-consumer genealogy services are often purchased as gifts.

These platforms allow for individuals who may not necessarily have access to their ancestral information to gain insight. For example, individuals who are adopted have the ability to find information on their birth parents or other extended family members. Additionally, DNA testing can be helpful - as supplemental data - with identifying health concerns or dispositions to specific genetic diseases. Making a use of a genealogical platform can help individuals with preventative care along with assessing specific risks that come from inheriting specific traits/diseases from ancestors.

Genealogy platforms often share the DNA data they receive from users with big pharmaceutical companies and medical researchers. These companies use that data in their research to advance medicine from a more personalized standpoint. One example of this benefit is from a study done by Dr. Abraham Palmer as University of California - San Diego School of Medicine. Working with the genealogy platform 23andMe, Dr. Palmer and his team had access to over 20,000 DNA samples from consenting 23andMe customers. The goal of there study was to determine if there is a genetic connection between genes that cause impulsiveness and drug use^[10].

Ethics

Inaccuracy

Genealogy platforms have been scrutinized for their lack of accuracy. While much of their information comes from their own records that they have compiled, much of it comes from users who may be unreliable. If a user enters a birth date inaccurately, intentionally or unintentionally, they may provide inaccurate relationships and analysis for many other users. Additionally, since different testing companies use different ethnic reference groups, consisting of now living test persons with unknown pre-census time origins, the ethnic/geographical estimations are typically highly contradictory among companies. Additionally, the results are based on the false premise that populations tend to stay in one place when in fact human populations are notorious for frequent movements.^[11] This means that genetic information linked to a certain geographical location can’t be tied to one group of people with any certainty. Genealogy platforms are aware of this inaccuracy, but their goal is to obtain and maintain a base of loyal customers by offering as much information as possible. This type of mistruth employed to achieve an end is a dangerous step toward ignoring the truth entirely. With this precedent in place, other companies may also find it acceptable to report mistruths to their consumers, while the will have no way to know what is the truth and what is not. ^[12] Dan Gillmor, author of the book Mediactive, encourages consumers of data to be skeptic^[13]. Such skepticism enables consumers to extract the information that is meaningful.

It is also important to note that is not recommended to use ancestry DNA tests for the diagnosing of conditions or diseases. In fact, consumers often make "important decisions about disease treatment or prevention based on inaccurate, incomplete or misunderstood information from their results^[14]". Moreover, many healthcare professionals affirm that DNA testing should only be utilized strictly for the purposes of "entertainment"^[15].

Privacy

Once a user’s information (manually entered, gleaned from digitized records, or DNA related) is added to a genealogy platform, all of that information is available for both the platform and other users to access. This is the principle upon which many genealogy platforms were built and helps the platforms to run successfully. However, this raises numerous privacy concerns, the largest of which is that DNA information on a genealogy platform is not protected by HIPPA.^[16] Genealogy platforms have the potential to greatly reduce the amount of informational friction ^[17] an individual can expect others to encounter when searching for information about them. As a result, a user of a genealogy platform may find that an enormous amount of their personal information, and in some cases personal family documents, is available for public consumption. It is not only the individual user who is affected. DNA information can provide information about all the individuals related to the user - as far removed as fourth cousins. Essentially, even if you did not submit a DNA sample or sign up for a genealogy service, your personal information may still be available to the public; the net effect being that genealogy platforms and direct-to-consumer DNA testing sites have rendered a significant amount of people vulnerable to the misuse of data (whether it be by malicious actors or the companies, themselves).

The Golden State Killer Case

On April 24th, 2018, a former police officer named Joseph James DeAngelo was arrested.^[18] He had been a suspect for California’s notorious Golden State Killer since the case began in 1987, but investigators were finally able to gather enough evidence to arrest him using the genealogy platform GEDmatch. To do this, the investigators uploaded a genetic profile that was created using DNA taken from one of the crime scenes to GEDmatch. They uploaded this profile under a fake name, and the platform was able to match the killer’s DNA with a distant relative of the killer. Initially, DeAngelo’s arrest was celebrated. However, as details about how he was captured surfaced, the issue of privacy became an immediate concern for the public. Before this case, investigators had searched through other databases exclusive to criminals, but in this case, they searched through a database of people who had not been proven to do anything wrong. Some argue that people who upload their personal data to genealogy websites such as GEDmatch have an expectation that their information will be kept private, and when familial searches are made, that privacy is breached. On the other hand, this specific warning and many others like it are explicitly laid out in the terms and conditions agreement within genealogy platforms. The problem is that people are likely to never read or find these specific warnings within these terms and conditions.

Racial Bias

One of the major dilemmas facing genealogy platforms is their natural bias towards non-whites. According to an article from PC World, most genealogy platforms' clients are American's of European descent. AncestryDNA (a subsidiary of Ancestry.com) and 23andMe has since expanded its clientele by increasing its international availability, however, it's predominantly in Europe. In order to eliminate this bias, their needs to to be a push for funding in non-white continents and countries.^[19].

Gathering data from indigenous populations, however, also comes with ethical concerns, such as respecting privacy, and not overselling or overestimating DNA results ^[20].

Further bias is exemplified by companies who choose not to disclose the information in databases; partners who use information from these databases for scientific purposes, must be cautioned that because the information is not being disclosed, it the claims being made might not be as reliable^[21].

See also

• Ancestry data
• DNA Testing

References

1. ↑ “Ancestry.com” Wikipedia, Wikimedia Foundation, 12 Mar. 2019, en.wikipedia.org/wiki/Ancestry.com
2. ↑ “23andMe.” Wikipedia, Wikimedia Foundation, 15 Apr. 2019, en.wikipedia.org/wiki/23andMe#Data_Policy.
3. ↑ "BillionGraves" BillionGraves Holdings, Inc. 2019.
4. ↑ "FamilySearch" Wikipedia, Wikimedia Foundation, 7 Apr 2019. https://en.wikipedia.org/wiki/FamilySearch
5. ↑ “Who Were They?” MyHeritage, www.myheritage.com/.
6. ↑ “Genealogy Software.” Wikipedia, Wikimedia Foundation, 22 Dec. 2018, en.wikipedia.org/wiki/Genealogy_software.
7. ↑ “Genealogical DNA Test.” Wikipedia, Wikimedia Foundation, 28 Mar. 2019, en.wikipedia.org/wiki/Genealogical_DNA_test#Audience.
8. ↑ “20 Million Members Have Connected To a Deeper Family Story.” Ancestry, www.ancestry.com/.
9. ↑ "Do Good Genealogy: 9 Exciting Volunteering Opportunities" Ancestrynow.findings, 2015, https://ancestralfindings.com/do-good-genealogy-9-exciting-volunteer-opportunities/
10. ↑ 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/.
11. ↑ “Pulling Back the Curtain on DNA Ancestry Tests.” Tufts Now, 30 Apr. 2018, now.tufts.edu/articles/pulling-back-curtain-dna-ancestry-tests.
12. ↑ Frankfurt, Harry. "Truth, Lies, and Bullshit". 2009.
13. ↑ Gillmor, Dan. Mediactive. United States: Dan Gillmor, 2010. Print.
14. ↑ “What Are the Benefits and Risks of Direct-to-Consumer Genetic Testing? - Genetics Home Reference - NIH.” U.S. National Library of Medicine, National Institutes of Health, ghr.nlm.nih.gov/primer/dtcgenetictesting/dtcrisksbenefits.
15. ↑ Brodwin, E. (2019, January 12). Genetic testing is the future of healthcare, but many experts say companies like 23andMe are creating more harm than good. Retrieved from https://www.businessinsider.com/future-healthcare-dna-genetic-testing-23andme-2018-12
16. ↑ Fottrell, Quentin. “Genealogy Sites Are Wild West of Privacy - Here's What You Give Away with Your DNA.” MarketWatch, 5 May 2018, www.marketwatch.com/story/genealogy-site-traps-alleged-serial-killer-how-your-dna-could-be-used-against-you-2018-04-28.
17. ↑ Floridi, Luciano. "Informational Friction". 2004.
18. ↑ Guerrini CJ, Robinson JO, Petersen D, McGuire AL (2018) Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biol 16(10): e2006906. https://doi.org/10.1371/journal.pbio.2006906
19. ↑ Holger, Dieter. “DNA Testing for Ancestry Is More Detailed for White People. Here’s Why, and How It's Changing.” PCWorld, 4 Dec. 2018, 6:04 AM, www.pcworld.com/.
20. ↑ Eveleth, Rose. “Genetic Testing and Tribal Identity.” The Atlantic, Atlantic Media Company, 27 Jan. 2015, www.theatlantic.com/technology/archive/2015/01/the-cultural-limitations-of-genetic-testing/384740/.
21. ↑ Royal, Charmaine D., et al. “Inferring Genetic Ancestry: Opportunities, Challenges, and Implications.” The American Journal of Human Genetics, vol. 86, no. 5, 2010, pp. 661–673., doi:10.1016/j.ajhg.2010.03.011. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2869013/