Ethics and DNA Testing

Ethics
DNA testing has opened up new opportunities for genealogists to identify possible relationships, break down brick walls in their research, and connect with lost family members. It has also enabled law enforcement to use genetic material to identify potential suspects in criminal cases. Appropriate ethical use of DNA is still being defined by society and the law. Around the world, laws and regulations like the General Data Protection Privacy Regulation (GDPR) in the European Union to take into account or attempt to regulate the ethical use of this powerful source of information. In the United States currently there is no federal legislation regulating the use of genetic data and advocating for its ethical use. States like California have enacted laws to try to fill that void and other states are following its example. However, even with existing legislation at the state level in the US, legal is not always ethical. In general, using DNA information to harm, harass, or embarrass others is not appropriate.

Because genetic information by its very nature is very personal, but also shared with family, careful consideration needs to be given before agreeing to its disclosure or use. Furthermore, there may be unintended uses and consequences that this powerful type of information may bring. It is also important to remember that what may be ethically appropriate now in a specific geography, may not be so in different geographies or at another time in the future. Some of these issues are still being debated and defined by society and the law.

Unlike a credit card, a username or password, genetic information is permanent and once reveled or compromised, cannot be changed or replaced. For that reason, before agreeing to anything regarding the collection, analysis and use of DNA should be carefully considered, not only for you, but also for family members.

Law Enforcement
Only 2 major DNA entities in the United States currently allow use by law enforcement: FamilyTree DNA and GedMatch. However, both of these websites give the user the option to opt-out of law enforcement matching. This means you are still completely able to use their DNA matching and other tools without law enforcement access if you desire. If you are opted-in to law enforcement matching on either site, law enforcement will only see the same information that any other of your DNA matches can see. Law enforcement will also only see that information if you are a DNA match to their kit. For more details about law enforcement involvement on these two websites, see the terms of service for GedMatch and FamilyTree DNA.

Discovering Biological Parents
Finding biological parents for adoptees (or others) can be beneficial, as it can open the door to knowledge about one's medical family history and other relationships. Though this can certainly be a positive family reunion, it may not be the case for every testee. Locating one's biological parents never has a guaranteed positive outcome for either the child or the parent(s). "Everyone has a right to know about their biological family. But no one has a right to a relationship." If you desire a relationship with a DNA match (including newly-discovered parents) but the match does not reciprocate that desire, do not continue to pester or push them into contact with you. This has the potential to burn bridges and create negative feelings. Some who take DNA tests may also discover unexpected parental relationships, such as learning that the parent that raised them was not actually their biological parent. This is often difficult for the child involved, and can disrupt relationships. "...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."

Privacy Laws
Privacy laws surrounding DNA vary by country. Genealogical societies in your country, specifically those interested in using DNA in research, may be able to provide you with more information. You may also wish to contact legal counsel for specific recommendations.

In the United States, DNA privacy is protected under the Genetic Information Nondiscrimination Act (GINA) of 2008. "The Genetic Information and Nondiscrimination Act of 2008 (GINA) protects the genetic privacy of the public, including research participants. The passage of GINA makes it illegal for health insurers or employers from requesting or requiring genetic information of an individual or of family members (and further prohibits the discriminatory use of such information)."

Respect Others' Privacy
As you send messages to your DNA matches, remember to respect their wishes if they express that they would not like to be contacted. People may take DNA tests for different reasons, and some may have no interest or wish to correspond with DNA matches. Do not push or pester for responses from matches if they prefer to keep a distance.

DNA tests can also reveal occasional "skeletons in the closet" for some testees. For example, one may discover that the father who raised them is not the biological father of their sibling, indicating their sibling has an unknown biological father. These kinds of new information that can arise through DNA tests are intricate, and can be complicated to navigate. A good practice, as outlined by the National Genealogical Society, "...respect the restrictions on sharing information that arise from the rights of another... as a living private person... [and] require evidence of consent before assuming that living people are agreeable to further sharing of information about themselves."

Account Protection
It is not impossible for any website (including DNA website) to experience a data breech, or other event that compromises the account privacy of their users. One good practice when creating and maintaining accounts on different websites is to use very strong passwords, such as a combination of random letters, numbers, and symbols. This makes your password more difficult to guess, and thus protects your account.

Another recommendation is to change your password frequently, such as once every six months or using a passphrase. Changing your password regularly also helps prevent others from easy access to your account, and your information held there.

For Further Discussion

 * Ethics, guidelines and standards - ISOGG
 * Skillbuilding: The Ethics of DNA Testing - BCG
 * Ethical Concerns of DNA Databases used for Crime Control - Bill of Health