Loss of Privacy Rights: Think Twice Before DNA Ancestry Testing

Loss of Privacy Rights: Think Twice Before DNA Ancestry Testing

Nearly 40 years ago, an infamous serial killer sparked fear in the United States. Deemed the “Golden State Killer,” the murderer claimed countless lives yet was never caught. He seemed to simply disappear without a trace, and his terrible crimes were stamped cold cases as decades went by with no clear suspect. Flash forward to April 24, 2018, and the murderer has finally been caught, perhaps with the help of your own DNA. Police and crime investigators arrested Joseph James DeAngelo after using an online DNA testing site called GEDmatch to investigate genetic profiles. The information collected from the genetic database of GEDmatch led to DeAngelo’s capture and criminal charges for 12 murders and over 50 rapes that occurred throughout the 70s and 80s (1).

The arrest of such an infamous murderer-rapist is highly laudable; however, the method through which information was gathered that led to this arrest has sparked intense bioethical debate because it involved secondary use of personal identifiable genetic information. Although criminal investigators have been using DNA analysis for decades, the Golden State Killer case is noteworthy because the condemning genetic information gathered that solved the case was not obtained from a forensic resource created specifically for criminal justice purposes as in the past. Genetic material collected from private individuals for commercial purposes was utilized--without the direct permission of the persons who had unwittingly supplied the DNA. The public is now turning its eye to the ethics of mining genealogy data for crime solving and many are concerned about the privacy of one’s personal genetic code. Do DNA testing companies have the right to use/give-out genetic information which was originally collected for personal/commercial purposes? Suddenly, sites such as “23andMe” and “Ancestry.com” no longer look so fun and innocent. By sending in your saliva to discover your ancestry, you may be giving away your genetic information and that of your relatives (who had no say in the matter) to scientists and crime investigators.

Over the past few years, more than 1.2 million people have sent their saliva to be tested at 23andMe and other genealogy sites to learn about their genetics. However, not everyone is aware of the significance of simply sending off one’s DNA in a nicely-labelled box to these companies (2). Some people, having recently learned of the potential non-consent uses of their DNA, have declared that companies are breaking constitutional and contract-based privacy rights. They argue that they are paying for a service with a specific end-result and crime investigators should not be allowed to unlawfully search and seize their collected data for other unintended purposes. However, according to ethical scientists Benjamin E. Berkman, JD, MPH; Wynter K. Miller, JD; Christine Grady, RN, PhD, authors of “Is It Ethical to Use Genealogy Data to Solve Crimes?,” collecting genetic information from website databases may not count as a "search" under the Fourth Amendment because of the "abandonment doctrine." This doctrine holds that anything discarded, including material that holds your DNA, isn't protected under privacy laws. Benjamin Berkman, head of the ethics of genetics and new technologies at the National Institutes of Health’s Department of Bioethics, states that under this legal theory, people have no reasonable expectation of privacy once a material, such as a hair clipping or a used napkin, is ‘abandoned.’ "When you upload your data, it's sort of like you're throwing away a toothbrush," Berkman said. "Legally speaking, I'm not sure that you should have an expectation of privacy" (3). In simple terms: once it’s gone... it’s gone, and this unfortunately applies to your personal genetic information once you send it off to a genealogy site. A bioethical, public conversation is starting as to whether we should hold DNA uploaded onto genealogy websites to the same privacy laws as DNA abandoned in public spaces. Courts in civil and criminal investigations have allowed law enforcement officials to test and utilize DNA left behind in various settings, and, therefore, it can be argued that since users of sites, such as 23andMe, voluntarily upload their DNA into these online commercial databases, this “abandoned” material may be used without the necessity of direct consent (4).

Though the use of genetic information may perhaps be deemed legal under the “abandonment doctrine,” many are unnerved and rightly upset by the fact that they seemingly agreed to give out their personal information and the information of relatives without fully understanding the severity of their actions. Berkman and his colleagues have found that many online companies do not inform their users that their personal information may be utilized in investigations and forensic analysis. Some other sites actually do mention use of personal information in their terms of service, but it is often completely overlooked in the process, as it is hidden in the fine print. 23andMe’s website, which has recently been updated as of July 17, 2018, states in their privacy section of terms and services that “Under certain circumstances your Personal Information may be subject to processing pursuant to laws, regulations, judicial or other government subpoenas, warrants, or orders. For example, we may be required to disclose Personal Information in coordination with regulatory authorities in response to lawful requests by public authorities, including to meet national security or law enforcement requirements. 23andMe will preserve and disclose any and all information to law enforcement agencies or others if required to do so by law or in good faith belief” (5). Though 23andMe does now provide wording informing you of the potential use of your genetic and personal information, you have to read through a lengthy terms of service contract. Complicated legal writing and seemingly endless paragraphs frequently dissuade the common individual from deep analysis, and, unfortunately, it seems most people blindly click the “I accept these terms” button without thoroughly processing the information provided or even reading the terms in the first place. Recent research in the biomedical world has found that individuals find it acceptable for their personal data to be used for widespread scientific purposes, but only if asked explicit permission first. With the recently solved DNA criminal investigations, it is uncertain just how people will respond to their genetic code being used for forensic purposes, especially since their data can be used to accuse others (3).

Law professor Natalie Ram and colleagues state in their essay published on June 8, 2018 in Science, that eroding limits on the use of crime-solving technology, such as with the recent use of genealogy sites to solve cold-cases “threatens our collective civil liberties and opens the door to socially and politically unacceptable genetic surveillance.” (3). Some advocates for the use of collected personal information from genetic testing sites have suggested this method of search could just be limited to solving very serious crimes and cold cases, such as with the Golden State Killer. However, as Ram points out, such limits have been tried before. Over the past few years, some U.S. states have started to allow the use of police DNA databases for “familial searches”--searches that may implicate close relatives of people in the databases as suspects. “States that embraced that technology initially said, ‘we’re only going to use this for really, really serious crimes.’ ” Yet in 2009, Colorado police convicted a suspect with this technique for “a burglary where someone broke into a car and stole about a dollar and a half in change,” Ram says (6). Allowing the lines concerning the collection and use of genetic information to blur so severely simply should not happen.

In this ever-expanding scientific age, it is overwhelmingly clear that it is important for both investigators and these online genetic websites to be thoroughly transparent to clients and the general public. The collection and use of this genetic information holds great power; we are able to do things today that were deemed science-fiction only a few years ago. With this power must come a new realm of policy and laws to adequately address the issues at hand. Science and technology are constantly progressing with humanity; it is vital that ethics and law also keep pace. The arrest of the Golden State Killer demonstrates the necessity of updating and changing our current rules, guidelines, and laws, so that investigators and police can ethically gather information and utilize it for the public good. It is evident that researchers should begin to study how many law enforcement agencies use forensic DNA searching and how they do it. Websites and investigators should not be allowed to use collected, genetic information without the explicit and informed consent of those providing it; moreover, sites that do “inform” their consumers need to make this consent blatantly clear and understandable for all--not buried in boilerplate. It should be made clear and exceedingly well-known through formalized standards and mechanisms for accountability that when you send off your DNA, your personal genetic data could be used for other forensic purposes. DNA testing websites need to legally and ethically strive for greater transparency. Most importantly, the laws need to be updated in order to ethically respond to the ever-growing scientific world we live in. The extent and range that investigators and government agencies can use genetic information must be clearly delineated by law. Bringing serious criminals to justice is laudable, but a dystopian future where the government genetically watches our every move with our own genetic information is not.

**As of publishing date, 23andMe has already begun modifying its user agreement and privacy terms to reflect potential additional uses and distribution of consumer genetic information. However, other DNA testing agencies have yet to update their terms, clearly showing that greater transparency is vital in the industry.

References:

  1. Selk, Avi. “The most disturbing parts of the 171-page warrant for the Golden State Killer suspect” The Washington Post. 2 June 2018. 

  2. Pirani, Fiza. “Can police legally obtain your DNA from 23andMe, Ancestry?” The Atlanta Journal-Constitution. 11 May 2018.

  3. Saplakoglu, Yasemin. “The Ethics Behind Using Genealogy Websites to Find Crime Suspects” LiveScience. 29 May 2018. 

  4. Crist, Carolyn. “Experts outline ethics issues with use of genealogy DNA to solve crimes.” Health News. 1 June 2018. 

  5. “Privacy Policy.” 23andMe. 17 July 2018. 

  6. Saey, Tina H. “Why using genetic genealogy to solve crimes could pose problems” ScienceNews. 7 June 2018. 

 

 



 

 

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