3
Ethics and Genetic Genealogy
Should you tell your uncle that he doesn’t share DNA with his sister (your mother)? Does it make a difference if that uncle is 35 or 95 years old? Should you help an adoptee who is predicted to be your first cousin, meaning that one of your aunts or uncles had a child you don’t know about, or should you ignore her requests?
Since DNA can both reveal unexpected biological relationships and disprove expected relationships, DNA testing can raise many ethical issues. Not every test-taker will encounter these tough questions, but as more people are tested, more opportunities for these issues arise. Making test-takers aware of the possible outcomes of DNA testing (as we’ve done throughout this book) can help prevent some of these issues, but this chapter will discuss how to work through these difficult questions that result from DNA testing and provide some ethical frameworks to consider when making decisions.
Ethical Issues Encountered by Test-Takers
If you or a relative are considering DNA testing, what are some of the ethical issues you might face? How should you deal with these issues once you discover them? Before we discuss how to anticipate or deal with any ethical issues, we will first take a brief look at a few of the ethical issues or dilemmas that might be encountered by a test-taker or genealogist as a result of DNA testing. There are many more, with others just being discovered as DNA testing becomes increasingly powerful.
Relationship Disruption or Discovery
Genetic testing can result in the discovery of genealogical relationships that the test-taker didn’t know existed. It is commonplace to find new second or third cousins as a result of DNA testing, since these relationships are more distant and families often lose track of each other after only a few generations. However, finding a new relative at the first-cousin level (or even closer) can be unexpected. For example, it is not uncommon to find new half-siblings, aunts/uncles/nieces/nephews, first cousins, or other previously unknown close relatives through test results. These relatives can be the result of a wide variety of family situations and can be a complete surprise to everyone involved or perhaps a family secret that was widely known but not discussed.
Genetic testing can also disrupt a genealogical relationship that the test-taker thought was based on a genetic relationship. In this common scenario, the test-taker and a relative—usually a second cousin or closer—both take a DNA test and discover they don’t share DNA as expected. The two relatives may discover they share absolutely no DNA in common. “Misattributed parentage” is the term given to the situation where a DNA test result suggests that a relationship is inaccurate, most commonly in Y-chromosomal DNA (Y-DNA) testing or when doing autosomal-DNA (atDNA) testing of close relatives (second cousin or closer). Misattributed parentage is much harder to detect if the relationship is further back in time.
Several ethical questions can arise when a DNA test unexpectedly reveals or disrupts a genealogical relationship. For example, the most logical question that may arise is whether you should share this information with the relative(s) that it impacts. If you ask a first cousin to take a DNA test and he doesn’t share DNA with you—meaning that he is not actually your first cousin—do you share that information with him, his parents, or your parents? As we’ll discuss in a later section, you have an obligation to share his results with him, but no obligation to explain the results or ensure that he understands them. Is it ethical to keep this information as secret as possible? Sensible, ethical people will possibly disagree on the proper course of action in this scenario, and there are no laws that require a specific response.
As another example, say you receive a request for assistance from a new close relative who was adopted (such as a predicted first cousin). The logical question that will arise is whether you should assist this new first cousin by sharing information with her. Should you share information about your family that the person could use to potentially identify her biological parent (who will be your aunt or uncle), should you ignore her request, or should you ask her not to investigate this connection? Your response to the new relative scenario might be different if, for example, the new relative appears to be a maternal half-uncle, and your maternal grandparents (one of whom appears to have been his parent) are deceased. In this scenario, fewer of the “key players” are involved and the revelation of a new family member may have less of an impact. Once again, sensible and ethical people will disagree on the proper course of action here.
Unfortunately, most test-takers do not understand prior to testing that the results can discover or disrupt long-held relationships. Other test-takers ignore the possibility because they are confident in their genealogical hypotheses. However, test-takers should be prepared to handle scenarios in which they discover either new relatives or that their existing “relatives” aren’t actually biologically related.
Adoption
Adoptees are one of the largest communities to embrace genetic genealogy testing, as it often provides the ability to circumvent stringent state laws regulating adoption records. As a result, test-takers may find they are closely related to an adoptee about whom they may or may not have had prior knowledge.
Discovering an adoption can lead to many difficult ethical issues. For example, what are the test-taker’s obligations to the adoptee? What are the test-taker’s obligations to his or her own family? Should adoptees be able to circumvent state laws that were enacted to restrict access to the facts surrounding an adoption? Whose rights should prevail: the adoptee’s, the biological parents’, or the adoptive parents’? Everyone should have a right to their own DNA, regardless of who provided that DNA. Regardless, navigating this minefield of potential ethical issues can be difficult.
Donor Conception
In the decades since sperm and egg donation first became possible, donors were promised anonymity, if they so desired. Many donors relied on that promise when they decided to go forward with the donation. However, the resulting offspring can circumvent that anonymity for less than a hundred dollars with the purchase of a DNA test.
Although every child deserves to have that information about his or her genetic heritage, this clearly conflicts with the anonymity that was promised to the egg or sperm donor. Unfortunately, the only way to protect the anonymity of donors is to completely prevent any and all DNA testing, an action that would have far more damaging consequences. Despite the ability of DNA testing to reveal information about egg and sperm donors, potential donors are sometimes promised anonymity even today.
Privacy
Privacy is a major concern for genetic genealogists. For example, DNA test results can implicate not just the test-taker, but also the test-taker’s close family members and even the test-taker’s distant genetic relatives. Given these far-reaching consequences, should a test-taker be able to take a DNA test without the permission of close relatives? Should a test-taker publicly share information about matches without the permission of everyone in the list? These privacy issues are among the most prevalent in the genetic genealogy community.
GENETIC EXCEPTIONALISM
DNA testing is a genealogical source that provides the test-taker with information about one or more genealogical relationships, which by their nature are personal and often sensitive. But do the results of DNA testing merit different treatment than conclusions drawn from other types of genealogical records?
Genetic exceptionalism is the belief that genetic information is unique and needs to be treated in a different way from other genealogical information. Proponents of genetic exceptionalism believe that genetic information requires strict and explicit protection, in part because of the ability of DNA to reveal information not just about the individual, but also about the individual’s family. In addition, DNA is in some ways predictive, as it can indicate predisposition towards (or even the presence of) certain genetic and/or medical maladies, some of which can be dangerous.
There is no question that genetic testing can reveal family secrets both new and old. Indeed, tens of thousands of genetic genealogists purchase DNA testing for exactly that reason: to discover the truth behind their own family secrets. Many other customers of genetic genealogy testing learn about family secrets they never knew existed. Some people will be thrilled to learn the truth about these family secrets, while others might be devastated. And with genetic testing becoming increasingly prevalent, these secrets are being revealed at an incredible rate.
But does DNA really reveal that much more information about families than traditional genealogy research? Other types of genealogical records, such as census records, birth certificates, deeds, or tax records often provide similar information for genealogists. For example, a birth certificate can reveal that parents who raised a child were in fact not its biological parents, or a census record can reveal that a family was in fact a blended family due to the census-taker’s use of words like “half” or “step.” After all, unexpected pregnancies, infidelity, adoption, divorce, and other family events that can trigger emotional responses are not experiences found only in modern times.
Even without DNA testing, genealogists may be able to uncover potentially sensitive information about relatives. A descendant of Helen Bulen, born about 1889 in New York, for example, might be surprised to discover her age from a census record. Although family relationships were not recorded in the 1892 New York state census, families were usually accounted for together. In this record, three-year-old Helen Bulen is living with Frank Bulen (age fifty-three) and Helen Bulen (age sixty-two). Although Helen would later identify Frank and Helen as her parents in a Social Security application, clearly Helen Bulen could have not given birth to Helen in 1889 at approximately age fifty-nine.
Similarly, a descendant or relative of Leander Herth might be surprised to discover in the 1900 census that Leander was a “Foundling” boy born in June 1898. Although Leander was a foundling, he possessed the surname of the family he was living with in the census, and it would be easy for a descendant to believe that he was a biological child of Joseph and Emma Herth. Many relationships and events are lost through time, either intentionally or inadvertently.
The detail “Foundling” in Leander Herth’s entry describes a family situation that’s more complicated than a genealogist may have originally believed, especially since Leander went by the surname Herth.
In addition to traditional records used for genealogical research, adoptees have been pushing for access to sealed adoption records. These records, perhaps more than any other, contain direct evidence of non-biological family relationships. In 2010, for example, the state of Illinois passed a law giving adoptees over age twenty-one the right to request a copy of their original birth certificates. Since the law went into effect, the state has issued more than ten thousand birth certificates to adult adoptees according to a 2014 article by the Chicago Daily Law Bulletin <www.chicagolawbulletin.com/Archives/2014/05/22/Adoption-Birth-Certificate-5-22.aspx>. Other states have enacted or are considering enacting similar laws. These laws have revealed thousands of non-biological family relationships without involving DNA. Accordingly, DNA does not have a monopoly on revealing family secrets.
Although genetic exceptionalism has many proponents, particularly in academic circles, the theory has been soundly rejected by many genetic genealogists who work with all different types of genealogical records on a daily basis. Given the kind of information available to genealogists through other types of records, it seems illogical to object to DNA testing because it reveals information about the individual and an individual’s family without also objecting to all forms of traditional genealogical research and laws that open records to adoptees. All records have the potential to reveal information about non-biological family relationships, and the kind of family events that can be turned up by modern DNA research and trigger emotional responses from descendants—adoptions, miscarriages, infidelity, divorce, etc.—aren’t unique to modern times.
Although DNA is capable of revealing information about a test-taker and the test-taker’s relatives and ancestors, it is just one of many such record types. Genealogists use a multitude of different record types to recover and rebuild information about both biological and non-biological relationships of the past and present. Just as genealogists must be careful about revealing information discovered about living people in census records or other record types, genealogists must be careful with the information revealed about living people by DNA testing.
Preventing and Resolving Ethical Issues
Learning more about DNA tests and their results is the most effective way for test-takers to prevent and deal with the ethical issues raised by testing. As a result, genealogists must have an in-depth understanding of the possible ethical issues in order to educate themselves and other test-takers.
As genealogist Debbie Parker Wayne wrote in the Association of Professional Genealogists Quarterly, most genealogists “believe that handling genetic information in the same way we handle genealogical information gathered from documents is the best path—that ‘genetic exceptionalism’ is not a valid theory for genealogy, even if it may have medical applications.” However, genealogists who are handling genetic information potentially full of family secrets have limited guidance on how to deal with this sensitive information.
Since DNA is not unique in its ability to reveal unknown, secret, or forgotten genealogical information, genealogists should see how their colleagues have dealt with privacy and ethical issues in other areas of genealogical research. For example, the National Genealogical Society’s Standards for Sharing Information with Others <www.ngsgenealogy.org/cs/standards_for_sharing_information>, written in 2000, advises genealogists to “respect the restrictions on sharing information that arise from the rights of another … as a living private person,” and “require some evidence of consent before assuming that living people are agreeable to further sharing of information about themselves.”
Similarly, the Code of Ethics of the Board for Certification of Genealogists <www.bcgcertification.org/aboutbcg/code.html>, which only regulates board-certified genealogists but provides insight into this issue, requires that these genealogists “…keep confidential any personal or genealogical information given to [them], unless [they] receive written consent to the contrary.”
Arguably, these broad standards and ethical guidelines provide enough guidance for genetic genealogists. However, they do not specifically address the ethical issues that can arise from DNA testing. Indeed, in the December 2013 issue of the National Genealogical Society Quarterly, editors Melinde Lutz Byrne and Thomas W. Jones lamented the lack of standards for using the results of DNA testing. As they noted, “[a]s difficult as it is to cite, describe, explain, or utilize this rapidly evolving tool, the real DNA-test quagmire is ethical.”
The Genetic Genealogy Standards
Recognizing this lack of guidance, a group of genealogists and scientists came together in the fall of 2013 to draft standards for DNA testing. Over the course of the next year, this group drafted a document called the Genetic Genealogy Standards, which were officially released on January 10, 2015 as an invited paper at the Salt Lake Institute of Genealogy Colloquium <www.thegeneticgenealogist.com/2015/01/10/announcing-genetic-genealogy-standards>. A copy of the Genetic Genealogy Standards is available at <www.geneticgenealogystandards.com>.
The Genetic Genealogy Standards are directed to “genealogists,” which is defined in the Standards as anyone who takes a genetic genealogy test, as well as anyone who advises a client, family member, or other individual regarding genetic genealogy testing. As a result, the Standards are directed at consumers rather than genetic genealogy testing companies.
The Standards are divided into two sections: The first section is directed to standards for obtaining and communicating the results of DNA testing, and the second section is directed to standards for interpreting DNA test results.
There are no absolutely right answers or absolutely wrong answers when it comes to ethical questions raised by genetic genealogy testing. However, the Genetic Genealogy Standards were written to help provide some guidance in preventing and responding to these ethical questions. In this section, I’ll outline some of the most important points presented by the Standards, together with some of the reasoning behind them.
STANDARD #1: Company Offerings
“Genealogists review and understand the different DNA testing products and tools offered by the available testing companies, and prior to testing determine which company or companies are capable of achieving the genealogist’s goal(s).”
This mandates that genealogists have at least a basic understanding of the various types of DNA testing and what the testing companies offer. DNA testing can be expensive, especially when testing at several different companies.
Accordingly, it is important that, in order to maximize our testing dollars, or the testing dollars of the relatives we ask to test, we ensure that the tests we order are capable of achieving our goals. We should not, for example, order an mtDNA test to examine the paternal line of a family tree (which, as we’ll see in chapter 5, will more likely benefit from Y-DNA testing).
STANDARD #2: Testing with Consent
“Genealogists only obtain DNA for testing after receiving consent, written or oral, from the tester. In the case of a deceased individual, consent can be obtained from a legal representative. In the case of a minor, consent can be given by a parent or legal guardian of the minor. However, genealogists do not obtain DNA from someone who refuses to undergo testing.”
The ethical concerns of genetic genealogy testing has never been more clear than in a 2007 New York Times article describing the great lengths that genealogists would go to obtain DNA from relatives, often without consent <www.nytimes.com/2007/04/02/us/02dna.html>. As profiled in the article, some genealogists essentially “stalk” potential relatives to get their DNA information, resorting even to salvaging a needed test subject’s coffee cup from a garbage can.
Under the Standards, however, any effort made without consent, either from the provider, a legal representative, or a parent/legal guardian, is prohibited. The only exception is situations where DNA testing is specifically mandated by law or court order. For example, some genealogists are routinely involved in cases in which an individual refuses to test but is forced to do so pursuant to a court order.
STANDARD #3: Raw Data
“Genealogists believe that testers have an inalienable right to their own DNA test results and raw data, even if someone other than the tester purchased the DNA test.”
This standard also advises that a genealogist must make raw data available to the person who provided the DNA sample. For example, if a genealogist purchases a test for an aunt, the genealogist must make the raw data available to the aunt even though she didn’t purchase the test. This promotes openness and sharing among those who purchase tests and those who provide the DNA that is analyzed by the test. This also reinforces the belief of many genetic genealogists that individuals have a right to their own genetic heritage.
Fortunately, the three major testing companies make raw data—e.g., a GG result at location rs13060385 on chromosome 3—available to the test-taker, so testing or recommending testing at these companies falls within the guidelines of the Standards. The Standards do not, however, specifically address a scenario in which a genealogist recommends a test at a company that doesn’t return raw data. Would recommending such a test violate the Standards?
STANDARD #4: DNA Storage
“Genealogists are aware of the DNA storage options offered by testing companies, and consider the implications of storing versus not storing DNA samples for future testing. Advantages of storing DNA samples include reducing costs associated with future testing and/or preserving DNA that can no longer be obtained from an individual. However, genealogists are aware that no company can guarantee that stored DNA will be of sufficient quantity or quality to perform additional testing. Genealogists also understand that a testing company may change its storage policy without notice to the tester.”
Formulating an efficient DNA testing plan capable of addressing a research goal is an essential component of responsible and informed genealogical research. Often this research plan will involve decisions about current and future DNA testing. As we’ll discuss later in the book, only Family Tree DNA currently offers the ability to order a DNA test using a stored sample remaining from a previous test or sample collection. Accordingly, if future testing—such as an upgrade or a different type of test—is an option, then storage options must be considered. This may involve, for example, only testing at Family Tree DNA, or testing at multiple companies including Family Tree DNA. Understanding all of the testing strategies and storage options available is an essential facet of genetic genealogy testing.
STANDARD #5: Terms of Service
“Genealogists review and understand the terms and conditions to which the tester consents when purchasing a DNA test.”
Unfortunately, consumers don’t read terms of service agreements before they accept them, in part because of the time it would take to read them all, and in part because they are often written in barely comprehensible legalese. In 2005, the computer repair business PC Pitstop added a clause to its End-User License Agreement offering a large financial reward to whoever contacted them at a given e-mail address. Amazingly, it took three thousand sales and five months before the first person discovered and responded to the clause to claim the reward <techtalk.pcpitstop.com/2012/06/12/it-pays-to-read-license-agreements-7-years-later>. With DNA test results, it is important that genealogists read and understand the possible implications of testing prior to purchasing or recommending a test.
STANDARD #6: Privacy
“Genealogists only test with companies that respect and protect the privacy of testers. However, genealogists understand that complete anonymity of DNA tests results can never be guaranteed.”
Once again, privacy is emphasized as an important aspect of DNA testing. Although it almost goes without saying that a genealogist shouldn’t test with a company that doesn’t protect a test-taker’s privacy, the Standards committee felt this was too important to omit.
However, it is also vitally important that everyone who agrees to take a DNA test understand that no one can guarantee complete anonymity of DNA test results, even if a test-taker uses a pseudonym. Indeed, the goal of most DNA testing is to find genetic matches. It should come as no surprise, therefore, that the results of DNA testing can be used to identify the test-taker even if the test is anonymous or de-identified by the testing company.
STANDARD #7: Access by Third Parties
“Genealogists understand that once DNA test results are made publicly available, they can be freely accessed, copied, and analyzed by a third party without permission. For example, DNA test results published on a DNA project website are publicly available.”
Once a test-taker agrees to make her DNA publicly available, there is no further protection for that DNA. Publishing results on the website of a surname project, for example, means that anyone is free to copy and use those results; there is likely no copyright protection in raw DNA data. Further, when someone accesses DNA test results on a public website with whom he has no contractual arrangement, there is no restriction on how those results can be utilized. As a result, it is important that genealogists understand the effect of making DNA test results publicly available.
The benefits of DNA testing must always be balanced with concerns about privacy for both the test-taker and the test-taker’s genetic and genealogical family members. While the only way to keep DNA completely private is to avoid DNA testing—although even this is not an absolute guarantee—the power of DNA testing to reveal genealogical information cannot be realized if it is never tested.
STANDARD #8: Sharing Results
“Genealogists respect all limitations on reviewing and sharing DNA test results imposed at the request of the tester. For example, genealogists do not share or otherwise reveal DNA test results (beyond the tools offered by the testing company) or other personal information (name, address, or email) without the written or oral consent of the tester.”
Asking relatives for their DNA can be challenging. People often have reasonable concerns about privacy and the misuse of test results that prevents them from testing. To alleviate their concerns, it is possible to offer the relative restrictions on sharing of their test results. For example, it is common to use a pseudonym or initials when testing a relative.
Once an individual has agreed to undergo testing, any restrictions she puts on that test must be honored unless the test-taker—or perhaps a legal representative or heir—is contacted to change the terms of the original agreement or arrangement. This is even true if the original restrictions hinder future research. For example, if a relative asked to use a pseudonym, the relative’s name cannot be shared with genetic matches unless consent has been established. The relative’s raw data or test results cannot be uploaded to a third-party site like GEDmatch <www.gedmatch.com>, for example, unless the relative’s consent has been obtained.
The Standards don’t address a situation in which a test-taker provided a genealogist consent to test DNA with certain restrictions, and later died. Does future consent have to be obtained from the heirs of the test-taker, or does the deceased test-taker no longer have any rights to the DNA? These questions remain to be answered, and may not have a direct correct or incorrect answer.
STANDARD #9: Scholarship
“When lecturing or writing about genetic genealogy, genealogists respect the privacy of others. Genealogists privatize or redact the names of living genetic matches from presentations unless the genetic matches have given prior permission or made their results publicly available. Genealogists share DNA test results of living individuals in a work of scholarship only if the tester has given permission or has previously made those results publicly available. Genealogists may confidentially share an individual’s DNA test results with an editor and/or peer-reviewer of a work of scholarship.”
Genealogists have long recognized the importance of privatizing and redacting the names of living people. In the DNA realm, however, genetic genealogists have been slow to embrace privatization. It is far too easy to take a screenshot of results and innocently share it online or in a presentation without removing the names of matches.
Matches should only be revealed if they’ve given explicit permission. Although this can be impractical with a long list of matches, it is necessary to protect privacy. There may be a few exceptions this rule—for example, an author sharing test results with an editor or peer-reviewer in an unpublished work of scholarship.
One gray area, however, is when results are shared with just one other person or a small group of people. For example, if a genealogist looks over his results with a friend or family member, should he first somehow redact the list of genetic matches? Or what if a genealogist displays her results during a meeting of a small DNA special interest group? These questions are unresolved, but most genealogists believe there can be an adequate balance between privacy and exploring results with others.
STANDARD #10: Health Information
“Genealogists understand that DNA tests may have medical implications.”
It is easy to tell a test-taker that AncestryDNA and Family Tree DNA, for example, do not reveal health information about the test-taker (23andMe intentionally tests for and reveals health information). However, this is an inaccurate statement. As we will see in the chapters about Y-DNA and mitochondrial DNA (mtDNA), some tests can reveal health information. Not only can the results of Y-DNA, mtDNA, and atDNA testing be mined for information about certain known medical conditions, but these results may lead to more discoveries in years to come as scientists better understand DNA. An otherwise innocent result today may indicate a propensity for a trait or medical condition tomorrow.
Accordingly, the most a genealogist can promise test-takers is that a test through AncestryDNA and Family Tree DNA does not intentionally look for health information and usually does not reveal health information about the test-taker.
STANDARD #12: Unexpected Results
“Genealogists understand that DNA test results, like traditional genealogical records, can reveal unexpected information about the tester and his or her immediate family, ancestors, and/or descendants. For example, both DNA test results and traditional genealogical records can reveal misattributed parentage, adoption, health information, previously unknown family members, and errors in well-researched family trees, among other unexpected outcomes.”
Understanding before testing that DNA test results can disrupt existing relationships and uncover new ones can prevent many of the ethical issues that arise. As the size of the commercial DNA testing databases grows, it becomes progressively easier to detect and solve these revealed and disrupted relationships. This is a decidedly positive development for anyone trying to uncover their genetic heritage, but it can also raise ethical questions that we’ve discussed in detail in this chapter.
Applying Ethical Standards in Research
Now that we’ve examined some potential ethical issues that you may encounter through genetic genealogy testing (and the ethical standards encouraged by members of the genetic genealogy community), how should you behave ethically while doing research? Many people will travel through their DNA journey without experiencing any unexpected results, while others might encounter an ethical issue with their very first test results. This doesn’t mean that people should be fearful of genetic genealogy. Rather it simply means that people must be aware of the possibilities, and prepared for these possibilities.
In practice, there are a series of simple steps that you can take to avoid or mitigate the impact of these ethical issues:
- Understand the possibilities. Be aware of the possible outcomes of DNA testing, including the possibility of discovering new close relatives you didn’t know existed, as well as the possibility of discovering that close relatives are in fact not related to you. This chapter explains many of these possibilities in detail.
- Study the Genetic Genealogy Standards and ensure that your DNA testing plan meets or exceeds all of the Standards. For example, do you understand the terms and conditions of the testing company you’ve chosen to test with? When you get the test results back, do you plan to respect the privacy of your matches?
- Encourage others to be ethical by sharing the Genetic Genealogy Standards when asking other people to test, and explain the risks of DNA testing. Discuss the possible outcomes with them, and ask whether they’d like to be informed if the results don’t align with expectations. Although this will potentially result in people refusing to test, this is preferable to testing people who don’t completely understand or appreciate the potential outcomes and therefore might have a negative experience with genetic genealogy testing.
- Respond to issues responsibly. When an ethical issues arises, be ready for it and be able to respond to it discretely. If you’ve asked a relative whether they want to be informed of an unexpected result, much of your response will already be mapped out for you; either they won’t want to be informed, or they will want to be informed and you’ll have to craft a thoughtful way to do that.
- Be prepared for the unexpected. Unfortunately, unexpected ethical issues can arise even with the best planning. For example, you could receive a request for assistance from a new genetic match predicted to be a new first cousin, meaning that one of your aunts or uncles—who haven’t tested their DNA—had a child you don’t know about. Responding to this issue will require awareness of your family’s dynamics and a responsible approach to assisting—or possibly not, depending on the situation—the new relative.
By following these easy steps, it is possible to anticipate and be prepared for most of the ethical issues that can arise from genetic genealogy testing, ensuring that DNA testing is as rewarding as possible for everyone.
There is no question that ethical guidelines such as the Genetic Genealogy Standards create real roadblocks to recruitment, testing, and research. However, in order to promote and support a tool that benefits everyone, it is necessary to create these roadblocks for those who don’t understand all the potential outcomes of DNA testing.
The Genetic Genealogy Standards cannot anticipate, prevent, or resolve every ethical issue that might be encountered by a genealogist or DNA test-taker. However, the Standards—and an understanding of DNA testing in general—can help educate test-takers about the possible outcomes of DNA testing. Armed with this knowledge, potential test-takers are able to make informed decisions about DNA testing, thereby preventing many of the issues that can arise.
CORE CONCEPTS: ETHICS AND GENETIC GENEALOGY
Genetic exceptionalism is the theory that genetic information is unique and must be treated in a different way from other genealogical information. However, all genealogically relevant record types—including DNA—are capable of revealing known and unknown information, including family secrets. As a result, many genealogists reject the idea that DNA should receive special or different treatment.
The only way to prevent the inadvertent disclosure of genealogical information—such as long-forgotten or hidden secrets potentially revealed by DNA testing—is to prevent all genealogical research.
The Genetic Genealogy Standards were created to provide ethical guidance to genealogists and potential test-takers. These Standards help establish best practices for genealogists using DNA testing, and they’re designed to ensure all participants in a DNA study have consented and to protect individuals’ data and privacy.