Forensic Genetics Policy Initiative
The Forensic Genetics Policy Initiative (FGPI) website contains resources relating to human rights standards for forensic DNA databases worldwide.
These resources include the FGPI report Establishing Best Practice for Forensic DNA Databases.
The FGPI website includes a forensic DNA database wiki with resources for each country.
Media resources
Newborn screening program used by police, New Jersey Monitor, July 2022
An article in New Jersey Monitor has reported that a new lawsuit is claiming that police in New Jersey, United States used DNA taken from a mandatory newborn baby health screening program.
All babies born in the state are required to have a blood sample taken within 48 hours of giving birth, as part of a mandatory screening program that looks at 59 different disorders. In the US, while screening is mandatory, what disorders are screened for may differ between states. The DNA records in New Jersey are retained for up to 23 years before being destroyed.
The new court case alleges that police requested the genetic information of a 9 year old child whose father was suspected of committing assault, instead of seeking a warrant for which the officers did not have probable cause. This DNA analysis was then used as probable cause to obtain a warrant to obtain a DNA sample from the father.
This case highlights the rising concerns over expanding DNA databases in the realm of health and other arenas e.g. direct to consumer testing, where private genetic information is being mined by government agencies in a manner that is largely free from public knowledge and consent, increasing genetic surveillance relating to privacy concerns. What is not known is how often the police are using health databases for criminal investigations.
Newborn screening programs are being expanded globally. The UK is set to begin a pilot program to screen 200,000 newborn babies, and, not just for specific genetic conditions but to sequence the whole genome. Similarly, the EU has recently embarked on a new genetic screening program for newborns, Screen4Care, in collaboration with commercial companies such as Pfizer, Roche, Takeda Pharmaceuticals, Sanofi, Novartis, ProQR Therapeutics, Lysogene, and Novo Nordisk. Globally, various programs are being undertaken that are generating large genetic datasets (see section Who has access to your data? for some examples), despite governance lagging behind in addressing the human rights concerns raised by such initiatives.
Your DNA Test Could Send a Relative to Jail, The New York Times, December 2021
A new article in the New York Times Magazine lays bare how commercial DNA databases that hold ‘ancestry’ data from consumers, continue to be used by police for criminal investigations. Due to the nature of genetic information being similar between relatives, consumers who have donated their DNA to companies may find that it has assisted in sending a relative to jail.
Genetic data, volunteered by individual consumers to private companies who perform ‘ancestry’ or genealogy tests, can be shared onto online services such as the company GEDMatch. These services then function to find relatives by uploading and comparing the DNA files from consumer tests to make genetic matches between DNA profiles on the database.
The rise of consumer databases is being increasingly accessed by police forces for criminal investigations. Recent company policy changes to quell consumer unease by restricting police access are reportedly being ignored in some cases, or are insufficient in providing protection against this growing encroachment into personal privacy rights. Other government authorities, such as immigration, have also used such databases to attempt to identify someone’s ancestral home for deportation services in Canada (see DNA, Police and Immigration section).
As noted in the article, the average person has around 850 genetically significant relatives, so that even with relatively few people categorised as ‘European Americans’ in a database, this covers a large segment of the United States population. Thus, while an individual may want to protect their own personal data from access by government authorities, the presence of DNA from relatives that may have donated theirs, means that government authorities may still be able to track and identify people who are not on the database themselves.
The rise in commercial DNA databases is becoming increasingly useful to government authorities like law enforcement, as this latest article illustrates, with genealogists collaborating with law enforcement to piece together detailed family trees in order to hunt down suspects. One example involved taking discarded chewing gum of a man suspected to have committed a murder while he was on a bike ride, to confirm a genetic match to the crime scene.
Since the media drew attention to the use of commercial DNA databases after the conviction of the Golden State killer in the US in 2018, consumers became increasingly aware of the police use of databases. Companies such as FamilyTreeDNA, a site with over two million users, were up until that point, also discreetly allowing the FBI to upload suspect profiles. Despite companies such as GEDMatch attempting to save their reputations and improve privacy standards by opting out all accounts from law-enforcement by default, these changes are reportedly being ignored by some law enforcement officers by not declaring themselves as police to perform the searches. Moreover, the article refers to ‘mission creep’, where more trivial crimes are now being investigated with the use of these databases.
These new databases, unlike those that have existed before them, instead of being created by the government have been created by the citizenry. Citizens have been encouraged by companies to find information on their heritage, based on flawed ancestry tests (see Commercial DNA Resources section for further information on ancestry tests). Calls to diversify genetic databases also raise concerns about the capture of genetic information from communities that are discriminated against by law enforcement.
Proponents argue that such commercial databases provide a “nimble, privatised solution” that can leap over regulatory hurdles and government bureaucracies. However, regulations are vitally needed to protect privacy of individuals against state overreach and surveillance mechanisms. Moreover, as contested in the article, there may be unintended consequences to this new technology and data collection: “An innovation comes along; expectations run wild, then fail to materialize; but the new technology quietly expands, in unexpected ways, until it winds up having a profound effect after all.”
Crucially, the idea of individual privacy is being fundamentally challenged by DNA collection. DNA is something that is becoming both “uniquely ours – and yet not entirely ours to control” as such technologies expand. The article concludes by raising the concerns and foresight of women speaking on these issues from indigenous communities in the U.S who, a decade ago when such technologies were first developed, would not give their DNA away without the consent of the entire community. What is apparent from this article, is that the genealogists themselves didn’t fully comprehend, wilfully or not, the population-wide privacy implications despite being leading the development of these projects. Nonetheless they make claim that it is too late to go back, that a collective decision has been made. This however is yet to be the case across the world and must be challenged.
Regulations are sorely needed to reign in the expansion of commercial databases and the growing conflation of commercial and government interests and access.
Whilst individuals should think very seriously before giving their DNA away, and if they already have done, understand that they have the right to remove their DNA from these databases should they wish, and after weighing up all the consequences.
The Intercept (July 2021): County Prosecutors Operate “Vast, Secretive” Genetics Surveillance Program
Local Californian prosecutors offer plea deals for minor misdemeanours if people give up their DNA to the local DNA database, which was the first to be set up by prosecutors anywhere in the United States. The “spit-and acquit” program has been going on for more than a decade.
This practice has raised concerns from criminal law experts regarding the potential expansion of genetic surveillance, the coercion and lack of consent being used to collect DNA from people, the lack of regulation of local databases, and their lack of success in solving crimes. The law is described as being both ethically and legally questionable.
The US has both national and locally run DNA databases. The growth of local databases has raised controversy as they are completely unregulated, being excluded from state and federal guidelines that require regulatory oversight to ensure some safeguards are in place to protect people’s genetic privacy as a human right. For example, in New York, while state law requires that a person be convicted of a crime before law enforcement can collect DNA, the local police database is not subject to these rules.
New York, as well as Connecticut, Maryland and in this case, Orange County databases, are amassing more and more DNA profiles. Orange County now has over 200,000 DNA profiles which is larger than many of the official state-run versions.
This 2021 Intercept article details various issues relating to the expanding unregulated Orange County database, where prosecutors demand that DNA is given for petty misdemeanours in order to avoid the costly and timely process of hiring lawyers and going to court. One example is a woman who was offered a plea deal in exchange for her DNA after she walked her dog off the leash. While she didn’t want to give up here DNA under this “spit-and-acquit” system, the alternative was considered arduous and expensive. This raises serious concerns over the coercion of consent, as not everyone has the resources to go to court when they do not want to give up their DNA. Instead people are routinely pleading guilty, paying a fine, and also giving up their DNA, rather than going to court or accepting threats from prosecutors that they may face more serious felony charges if they say no.
The Orange County system means that there are now people on the local database that would not be allowed to be added to the national database based on such minor offences. Moreover, there is no legal right to expunge the profiles. Local databases also suffer from lack of quality control, which may impact any criminal investigation, raising the chances of technical errors such as false-matches. This mass collection of DNA also raised the question as to whether or not this practice is merely a way to increase DNA collection from people. Communities who are disproportionately targeted by police may thus be subject to yet more surveillance and social control despite a lack of serious criminal offences being committed.
The article concludes that there is a lack of evidence of success of the Orange country database in solving crimes. It appears only 0.67 % of genetic samples form crime scenes were matched to the local database.
Global News (2018). DNA tests: How your data can be used for deportation and imprisonment
Users risk having their genetic data accessed by Big Pharma companies, immigration agencies and police departments.
New York Times (May 2021): Two New Laws Restrict Police Use of DNA Search Method
Maryland and Montana have passed the nation’s first laws limiting forensic genealogy, the method which allows police to use commercial genetic databases for police investigations and to track individuals using the DNA of relatives.
The first laws to protect genetic privacy have been passed in the US States of Maryland and Montana. The rise of commercial genetic testing companies, along with the increasing use of DNA for forensics, is increasing concerns over genetic privacy, as big datasets from different spheres become conflated and sharable. These new laws provide an example of how such issues may be partially addressed.
In Maryland, law enforcement can no longer upload DNA profiles from crime scenes unless
- A search warrant is obtained from a judge
- The case involves violent crimes
- only certified genealogists perform the DNA searches (from 2024)
- Law enforcement can only use databases that have explicitly gained consent to participate in DNA searches
- Searches must first be performed with the government-run forensics DNA database before using commercial databases, which has much less genetic information on it, limited to data that enables identification of an individual, not additional genealogical or health-related information.
In Montana, the new law is less restrictive. Search warrants will be needed but there is no restriction based on the type of crime.
Such new regulations are needed to address the often opaque collaboration between commercial genetic database companies and law enforcement. Some companies such as 23andMe and Ancestry, have policies in place to make their databases unavailable without a court order, but other companies have a default setting in their terms and conditions that automatically opt people in for law enforcement searches. This means that companies such as FamilyTree and GEDMatch, will no longer be able to give unrestricted access to law enforcement. However, they have already stated that they do not plan to update their policies for state laws that do not apply to the whole country.
Oray & Katsanis (2021) Ethical considerations for DNA testing as a proxy for nationality
This study summarises some of the ethical, practical and scientific concerns and potential uses of DNA testing as a means for proving nationality. While the numbers of stateless people in the world continue to rise, there are urgent needs to resolve this problem, with nationality often associated with access to basic social and economic benefits such as the ability to receive a job, education and healthcare. However, DNA tests are not proof of nationality, and could be associated with unintended consequences such as promoting discrimination, stigmatisation, bias and potentially eugenics.
The study concludes that “As DNA and genetic testing become more relevant in immigration and migrant proceeding, it is imperative to consider the unintended consequences of conflating genetic ancestry with nationality. It is imperative that both the state and stateless persons are protected. It is important that the logistics of DNA testing for nationality, whether relationship or ancestry, are considered so that costs are not a burden, and that personal information is handled with restrictions on use and confidentiality.”