December 2019 | Volume XXXVII. Issue 6 »
Branching Out: Helping Patrons with Genealogy and DNA
December 2, 2019
Amber Lowery, Peoria Public Library
The commercials and advertisements are just about everywhere you look; multiple companies on multiple platforms all offering the same, yet different promises of learning more about your family history, right in your own home. For two milliliters of saliva or a quick scrub of the inside of your cheek, one can supposedly learn everything they ever wanted to know about their family history, and the trend affects libraries.
In just the past few years, DNA and genetic genealogy has grown by leaps and bounds, as the price becomes more affordable and companies vie for customers. One of the foremost companies, Ancestry.com, reportedly has more than 20 million people in their database. This is quite a feat, considering that the company began selling kits only seven years ago. There is an excitement cultivated by the advertisements, promising answers to long-held questions. It leaves the interested public in one of two categories, however: those who want to test, but have questions, and those who have tested, but still have questions. The public library should be a source of answers.
As a reference assistant who also happens to be a genetic genealogist, I see and talk to people almost daily on this subject. Of those who have not tested, there are the patrons who are almost desperate for information about their heritage, but paralyzed by the number of testing options. Then there are others who worry about the safety and privacy.
BUYER BEWARE?
With everything we do online today, naturally, there is a concern about protecting one’s privacy when it comes to DNA testing. There are a number of points to take into consideration, however. Every reputable commercial DNA testing company has a clear privacy policy. Companies are highly territorial and protective of their clients’ information. Lax security would be bad for business, after all.
The user has control over what information is used and shared. If a tester does not want the collected DNA matched with other users or the sample used in research, they have the option to opt out. One can even decide later to opt out or delete your test results entirely, but companies such as Ancestry.com note that, if one’s information was part of ongoing medical research, that cannot be withdrawn after the fact.
“If you have given your consent to participate in ongoing research efforts and you delete your results, we will stop using information about you in any future research. However, information cannot be withdrawn from studies in progress, completed studies, or published results,” states Ancestry.com’s online privacy policy.
Helping patrons find and understand what they are agreeing to is part of our job, especially since these direct-to-consumer kits are so popular and connected to genealogy databases at many libraries. (Ancestry Library Edition and HeritageQuest Online at Peoria Public Library.)
Keeping abreast of changes—good and bad—in this industry is challenging. There have been data breaches1 and concerns about how data are shared with third parties2, even prompting the Federal Trade Commission’s scrutiny since these companies are not regulated under HIPAA, the federal Health Insurance Portability and Accountability Act. A bipartisan group of senators has introduced legislation to extend HIPAA’s reach to these DNA-testing services.
Some concern is warranted. Earlier this year, FamilyTreeDNA, one of the country’s largest at-home genetic testing companies, apologized to customers after failing to disclose that it had shared DNA data with the FBI. More than 2 million records were shared.3 Other testing firms, such as Ancestry.com, state on its website that the company “does not voluntarily cooperate with law enforcement,” but if “compelled to disclose your Personal Information to law enforcement, we will do our best to provide you with advance notice, unless we are prohibited under the law from doing so.” In the interest of transparency, Ancestry produces a report listing the number of valid law-enforcement requests for user data.
Meanwhile, law enforcement is using open-source sites such as GEDmatch, which is free and has users voluntarily uploading their data, to find DNA matches and solve crimes. One of the most famous cases solved to date was that of the Golden State Killer, a serial rapist and murderer believed to be responsible for three crime sprees throughout California from 1974 to 1986.
Given the issues raised, it’s important to advise patrons to carefully read the terms and conditions of any testing service they choose, but millions of people have already taken the plunge.
FLESHING OUT FAMILY TREES
For those who have tested, many of them do not understand how to read their results and use them to find more information. Other patrons have tested, but discovered unexpected, sometimes life-altering, information. These patrons, and others, have started coming to the library looking for answers, leaving library employees at a disadvantage unless there is an interested and prepared person on staff.
I began my adventure into genetic genealogy and DNA just over three years ago, after a friend strongly suggested I purchase and submit a DNA kit. I was very apprehensive about DNA, not because of privacy issues or which company to use, but because I am not well-versed in science subjects. It can be quite intimidating to the traditional researcher to adopt this technology. Over the last couple of years, I worked diligently to understand this technology, its application to genealogy, and how to explain it to members of the general public. In fact, since that first test, I have tested with, or uploaded data to, five of the major DNA-testing websites to study differences with each company. At my own expense, I have also tested around 30 known relatives to compare their data.
There are a number of excellent books and online resources, such as blogs and Facebook groups (see sidebar), that help me assist patrons with their questions about DNA. Since 2017, I have given a number of programs teaching interested parties the fine points of testing and what one can learn from it. Such programs have included a four-session class on DNA with Bradley University’s OLLI (Osher Lifelong Learning Institute) program for seniors, library conferences, genealogy societies, lineage societies, and the general public. Several of the blogs I follow are well-written and clearly explain developments and methods of research.
Today, my efforts to learn everything I can about genetic genealogy give me a wealth of information to pass on to our library’s patrons. From answering patrons’ questions about privacy, to making recommendations on the company with which they should test, based on their needs, I can give them guidance and information. I help those who just received their results interpret the information. Sometimes, it is as simple as offering to review their DNA matches or listen to a theory. I make connections for people to continue their research. From my own experiences, I suggest resources based on their questions and comprehension. A dry erase board and blank family tree charts are some of my favorite tools to use when working out the puzzles of DNA.
Learning about DNA takes effort and dedication, but libraries and staff can provide help to patrons in the immediate future. It is as simple as providing a handout or adding a page to the library’s website offering resource suggestions to patrons. Seek out the local genealogy society and request its assistance in programming. Ask the library to pay for a kit for an interested staff member, who can then learn by doing testing on one’s own.
While DNA cannot and should not be considered the only resource when researching a family tree, it is an invaluable tool in anyone’s genealogy quest. As library staff, we are called to guide our patrons through the quagmire of materials, not to find just any information, but to draw attention to the best resources available. Learning about DNA and how to use it in genealogy is just another step in our never-ending journey to help our patrons help themselves.
1 https://www.hipaajournal.com/direct-to-consumer-dna-testing-serviceexposed- consumer-records-online/. July 12, 2019 HIPAA Journal article; https://www.reuters.com/article/us-myheritage-privacy/security-breach-atmyheritage-website-leaks-details-of-over-92-million-users-idUSKCN1J1308;
2 https://www.fastcompany.com/40580364/the-ftc-is-investigating-dnafirms-like-23andme-and-ancestry-over-privacy; https://time.com/5349896/23andme-glaxo-smith-kline/
3 https://www.nytimes.com/2019/02/04/business/family-tree-dna-fbi.html
Resources for Learning About DNA Testing
Books:
The Family Tree Guide to DNA Testing and Genetic Genealogy by Blaine Bettinger (Family Tree Books, 2016)
Genetic Genealogy in Practice by Blaine Bettinger and Debbie Parker Wayne (National Genealogical Society, 2016)
Facebook Groups:
Genetic Genealogy Tips and Techniques
DNA Detectives
Websites:
International Society of Genetic Genealogy (https://isogg.org/wiki/Wiki_Welcome_Page)
Your Genetic Genealogist (http://www.yourgeneticgenealogist.com/)
DNAeXplained (https://dna-explained.com/)
DNA Painter (https://dnapainter.com/)
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