My Opinion

After doing some research on FamilyTreeDNA and getting information about their situation, I would recommend that they clearly notify their customers about the big change in their Terms of Service. Once the customers are notified, I would allow them time to decide if they want to opt out by completely deleting their DNA profile on FamilyTreeDNA’s database, as well as respecting their decision. The two ethical framework related to this would be Deontological and Kant’s Ethics. Within Deontological, it talks about the Principles of Justice where they believe that the rights of individuals and society must be balanced. With this situation, they want to find the criminals. On the other hand, you cannot break the law to enforce the law. For example, if the they think they found someone guilty, they cannot break into their home for evidence, unless they have a search warrant. The other ethical framework is Kant’s Ethic, which talks about making ethical decisions by deciding whether everyone acted this way, would it be acceptable? In this case, how would you feel if everyone knew about your actions? FamilyTreeDNA changed their Terms of Service without telling their customers because they did not want them to know about actions they were taking. This is a big change, which goes against their original Terms of Service agreement, which states that they do their best to protect their customers.

We make every effort to give the minimum degree of cooperation legally required when complying with legal requests for any additional user information.

They did not want to show the dark side of what they had been doing by changing the Terms of Service, which is unethical. The possible outcome if they had notified their customers beforehand about the change in Terms of Service is that they would be honoring their contract and showing their loyalty to their customers.

Based on their website, they are committed to keep their customers’ DNA private.

The other approach is to share the DNA profiles of their customers with the law enforcement agencies, which they have been doing. The ethical framework about this situation is Teleological because its results are outcome-based. For example, they were able to identify the Golden State Killer, Joseph James DeAngelo, through a genetic company. But acquiring DNA samples without a warrant or the permission of their clients can result in the evidence being thrown out in a court of law. This can result in the criminal being set free, which is a disservice to all involved, especially the victim.

Different Perspectives

Recently, FamilyTreeDNA changed the Terms of Service without notifying their customers. On the other hand, another genetic testing company, GEDmatch did the right thing by notifying their customers about the change in their Terms of Service. They informed their customers by making sure they either read and accepted the new change or have an option to remove their DNA from the data when they logged into their account. FamilyTreeDNA’s old Terms of Service was stated,

You agree to not use the Services for any law enforcement purposes, forensic examinations, criminal investigations, and/or similar purposes without the required legal documentation and written permission from FamilyTreeDNA.

Now, the new Terms of Service states,

You agree to not use services for law enforcement purposes unless the DNA Sample submitted or Genetic Information supplied was obtained and authorized by law enforcement to either: (1) identify a perpetrator of a violent crime, as defined in 18 U.S. Code (924) (e) (2) (B), against another individual, including sexual assault rape, and homicide; or (2) identify the remains of a deceased individual.

Ever since the news spread about FamilyTreeDNA releasing genetic information to the FBI, there was a large spectrum of reactions from the society. From a blogger, thednageek, expressed its feelings by mentioning that it is inappropriate for FamilyTreeDNA to release the genetic information of innocent people to solve crimes. This can can potentially violate the Fourth Amendment of the United States Constitution. With that being said, the blogger was asking if we can trust FamilyTreeDNA again. For the privacy advocates it is a concern because the FBI’s ability to match genetic profiles that customers submitted to a private company are now being used in ways that most of the customers are unaware of and that some would likely object to. Despite the concerns, FamilyTreeDNA touted their work with the FBI. A genetic genealogist based in Livermore, California stated, “All in all, I feel violated, I feel they have violated my trust as a customer. I’ve got to decide whether I want to opt out of matching or delete my kits”. Another British genealogy enthusiast, Debbie Kennett, stated, “I would be very against Family Tree DNA allowing law enforcement to have open access to their DNA database. I don’t think it’s right for law enforcement to use a database without the informed consent of the consumer”. In another article, Debbie Kennett stated, “The real risk is not exposure of info but that an innocent person could be swept up in a criminal investigation because his or her cousin has taken a DNA test. On the other hand, the more people in the databases and the closer the matches, the less chances there is that people will make mistakes.”

In contrast, a survey was conducted by a genealogist, of people involved in genealogy in the U.S. and Europe, 85% of respondents said they were comfortable with law enforcement using their DNA profiles to catch a serial killer or rapists. 96% of those who participated in the survey had taken a DNA test. There are two different perspectives on this situation of FamilyTreeDNA releasing the information to the law enforcement. Some people are against the idea of FBIs going through DNA samples to find evidence of a crime. While others are for it because they think solving crimes correctly by identifying the offender will give families and friends, as well as the community, a peace of mind during the difficult times. Also, some think it is unethical of them to change the Terms of Service without informing their customers.

Sources

https://thednageek.com/ftdna-opens-the-door-to-the-cops/

https://www.buzzfeednews.com/article/salvadorhernandez/family-tree-dna-fbi-investigative-genealogy-privacy

http://fortune.com/2019/02/01/genetic-testing-consumer-dna-familytreedna-fbi/

Ethical or Unethical?

The company FamilyTreeDNA, unintentionally created a platform that could help law enforcement agencies solve violent crimes faster than ever. They agreed to quietly open the database of 1 million records to the FBI to investigate the DNA samples. FamilyTreeDNA became the first private company to work with the FBI. They believe that the FBI should have the ability to solve crimes, such as rape, to give the victims some relief from their situation. The agents from the FBI will not be able to get as much information as the customers receive. As stated in their law enforcement guide from the FamilyTreeDNA, it says,

In certain circumstances, FamilyTreeDNA may be required by law to comply with a valid court order, valid trial, grand jury, subpoena, or search warrant for additional personal or genetic information. FamilyTreeDNA requires a valid legal process in order to consider producing any additional information about our users not stated in our Terms of Service and Privacy Statement.

Bennett Greenspan stated, “the firm would not be violating its terms of privacy to its customers, despite the the FBI’s access”. Since they do not want to violate the terms, they do not have a contract with the FBI. With that being said, the FBI cannot freely look through the databases because of the different privacy concerns. For any reason, the customers have the option to opt out of any familial match to prevent their profiles being searched by the FBI. If they do that, the customers won’t be able to know who their possible relatives are.

Federal and local law enforcement agencies have used public genealogy databases to solve criminal cases, including the Golden State Killer, Joseph James DeAngelo. Based on the DNA profile being uploaded to the database, the detectives were able to identify distant relatives related to the serial killers and rapists. From there, they were able to identify the suspects of crimes. In March 2017, FamilyTreeDNA was faced with a warrant for information during the search of Joseph James DeAngelo.

One of the many victims, Victor Hayes and his girlfriend, faced the Golden State Killer on October 1st in the middle of the night in his home. Below is a video of a rare interview from Victor Hayes reflecting that night.

Victor Hayes’ rare interview about the tragedy.

Since FamilyTreeDNA is a private genetic testing company, they technically have the right to do whatever they want to do. In my opinion, the FBI has many other ways to find evidence other than having to go through a genetic testing company. Releasing the user’s genetic information is something you should not have to share because it is confidential, unless you get their permission to do so. The customers can easily lose their loyalty to the business if something unethical was done.

Sources

https://www.sbs.com.au/news/insight/familytreedna-admits-to-sharing-genetic-data-with-fbi

https://www.familytreedna.com/legal/law-enforcement-guide

https://www.mercurynews.com/2018/07/15/lot-of-shame-lot-of-anger-for-the-first-time-since-golden-state-killers-arrest-a-male-victim-gives-rare-interview/

The History

FamilyTreeDNA became the first company to provide direct-to-consumer DNA testing for ancestry back in 2000. FamilyTreeDNA is a division of Gene by Gene, which is a commercial genetic testing company based in Houston, Texas. FamilyTreeDNA company was founded by Bennett Greenspan, who is a lifelong entrepreneurship and genealogy enthusiast. He was studying his family history and started with his mother’s side. When he came across an obstacle, he realized that there are two cases of genetics being used to prove ancestry that had recently been covered in the media. He contacted Dr. Michael Hammer at University of Arizona, to discuss using the same method of DNA comparison for his own genealogy. Bennett then discovered that the academic lab did not provide testing directly to the public. The conversation between Bennett Greenspan and Dr. Michael Hammer sparked the idea of starting his own business. Bennett Greenspan, along with two business partners, Max Blankfeld and Jim Warren established the first genealogy with direct-to-consumer DNA testing for ancestry. In the beginning of their journey with the company, they did all of the lab testing in the Research lab at University of Arizona. Their first scientist was Dr. Michael Hammer. FamilyTreeDNA has became well known for its Y-chromosome STR testing for the Cohen Modal Haplotype.

Left to right: Bennett Greenspan, the President of FamilyTreeDNA, and Max Blankfeld, one of the business partners

Currently within their company, the customers have an option to purchase either Paternal Ancestry (male only), Family Ancestry, or Maternal Ancestry (female only). Once they purchase a test of their choice, they get to set up an account on the website. After that, they will take the test by swabbing the inside of their mouth and mail the kit in the prepaid package that FamilyTreeDNA provides. Like most DNA companies, FamilyTreeDNA does not send the DNA to any third party for testing. They do all of the testing on-site in their state-of-the-art laboratory. They use two different types of testing machines, HumanOmniExpress-24 chip and NovaSeq Sequencing System to receive the most accurate result. It will take about 4-8 weeks to notify the customers through email saying that their test result is on their account that they previously set up.

FamilyTreeDNA has a great place to secure all of the information from their customers. The security provides protection against loss, misuse, or alteration of customer data under their control. If the customers want to send in a complaint about their information possibly not being used properly, they can contact FamilyTreeDNA directly with the address provided on their website. FamilyTreeDNA has certified its compliance with both the EU-U.S. and Swiss-U.S. privacy Shield Frameworks as set forth by the U.S. Department of Commerce regarding the collection, use, and the personal information that is being transferred from European Union and Switzerland to the United States. According to the FamilyTreeDNA Law Enforcement Guide, in certain situations, FamilyTreeDNA may be required by law to submit by court order, valid trial, grand jury, subpoena, or search warrant for personal or genetic information. Within the Law Enforcement, they have permission to use the customers’ personal and genetic information to identify the remains of a deceased individual or to identify a perpetrator of homicide, sexual assault, or abduction.

Sources

https://www.familytreedna.com/idev_id=1773&utm_source=1773&utm_medium=affiliate

https://www.familytreedna.com/legal/privacy-statement

https://www.familytreedna.com/legal/law-enforcement-guide

https://www.houstonpress.com/news/whos-your-daddy-6549693

FamilyTreeDNA

The company FamilyTreeDNA, which is one of the country’s largest at-home genetic testing companies, had an ethical issue that came up in early 2019. Recently, the president, Bennett Greenspan, publicly apologized to the users for releasing DNA information to the F.B.I. without their permission. FamilyTreeDNA believes that they should have the rights to help the F.B.I. to solve violent crimes and rapes.

Joseph James DeAngelo is a U.S. Navy veteran who served in the Vietnam war. In 1973 he became a police officer in Exeter, California. He was known as the Golden State Killer in many counties across California. He was accused of raping at least 50 women and murdering at least 10 people during the timeframe of 1976 – 1986. The investigators believe that during his time as a police officer he was preying on the community. After the crimes were reported, Joseph James DeAngelo’s DNA was tracked down through a genealogy website similar to Ancestry.com. Since the DNA information was not allowed to be released without court order. They used GEDmatch.com, which is an open-source website that collects genetic profiles that people share publicly. The investigators with the Sacramento County Sheriff had to watch him when he went out and obtained DNA information when he would throw something out. They also collected DNA samples at the different crime scenes. When they had evidence of the DNA samples from many of the crimes, they were able to link the majority of them back to Joseph James DeAngelo.

Joseph James DeAngelo, the Golden State Killer

FamilyTreeDNA thinks that by taking the action of working with the FBI will help families who are dealing with horrific situations, to give a peace of mind, knowing that they were able to identify the offender. On the other hand, it is unethical to release the DNA information without the user’s permission. If the Healthcare companies found out that their patient has the genes for cancer and/or other health issues, they may want to charge them extra knowing that they are likely to get it in the future. In the article it says, “…FamilyTreeDNA had marketed itself as a leader of consumer privacy and a fierce protector of user data, refusing, unlike some of its competitors, to sell information to third parties”. After the users found out about it, there was backlash from them because they thought that FamilyTreeDNA would respect their privacy and keep it confidential.

Sources

https://www.ajc.com/news/national/golden-state-killer-tracked-down-using-dna-genealogy-website-officials-say/N27nonZCBihxxfaHErc16I/

https://theweek.com/articles/761206/michelle-mcnamaras-tantalizing-roadmap-finding-long-lost-serial-killer

https://www.nytimes.com/2019/02/04/business/family-tree-dna-fbi.html