If you’ve given your DNA to a DNA database, US police may now have access to it
Jane Tiller, Monash University
In the past week, news has spread of a Florida judge’s decision to grant a warrant allowing police to search one of the world’s largest online DNA databases, for leads in a criminal case.
The warrant reportedly approved the search of open source genealogy database GEDMatch. An estimated 1.3 million users have uploaded their DNA data onto it, without knowing it would be accessible by law enforcement.
A decision of this kind raises concern and sets a new precedent for law enforcement’s access to online DNA databases. Should Australian users of online genealogy services be concerned?
Why is this a big deal?
GEDmatch lets users upload their raw genetic data, obtained from companies such as Ancestry or 23andMe, to be matched with relatives who have also uploaded their data.
Law enforcement’s capacity to use GEDmatch to solve crimes became prominent in April last year, when it was used to solve the Golden State Killer case. After this raised significant public concern around privacy issues, GEDmatch updated its terms and conditions in May.
Under the new terms, law enforcement agencies can only access user data in cases where users have consented to use by law enforcement, with only 185,000 people opting in so far.
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The terms of the warrant granted in Florida, however, allowed access to the full database – including individuals who had not opted in. This directly overrides explicit user consent.
GEDmatch reportedly complied with the search warrant within 24 hours of it being granted.
Aussies are also at risk
GEDMatch is small fry compared with ancestry database giants Ancestry (more than 15 million individuals) and 23andMe (more than 10 million individuals), both of which have DNA data belonging to Australians.
Australians who wish to have ancestry DNA testing have to use US-based online companies. Thus, many Australians have data in databases such as Ancestry, 23andMe and GEDMatch. The granting of a warrant to search these databases by US courts means those searches could include Australian individuals’ data.
Ancestry and 23andMe both have policies saying they don’t provide access to their databases without valid court-mandated processes.
Each company produces a transparency report (see here and here) which includes all requests for customer data that have been received and complied with. Currently, that number is low. But it remains to be seen how each would respond to a court-ordered search warrant.
Furthermore, while Australia currently doesn’t have it’s own genetic database (and no plans have been announced), the federal government’s commitment of A$500 million to the Genomics Health Futures Mission indicates a growing interest in the power of genomics for health.
If Australia wants to remain internationally competitive, a national genetics project is a natural next step.
We need DNA privacy legislation
In Australia, courts can approve warrants that intrude into private information, and entities can only protect data to the extent that it’s protected by law.
Thus, the privacy policies of companies and organisations that hold genetic data (and other types of private data) usually include a statement saying the data will not be shared without consent “except as required by law”.
The Australian Information Commissioner can also allow breaches of privacy in the public interest.
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It has been more than two decades since Senator Natasha Stott-Despoja proposed the Genetic Privacy and Non-Discrimination Bill.
Although Australia has a patchwork of laws that protect citizens’ genetic data to an extent, we still have no specific genetic data protection legislation. A broader legal framework dealing directly with the protection of genetic information is now required.
Australian politicians have previously shown willingness to use genetic information for government purposes. As genetic advances strengthen the promise of personalised medicine, Australian academics continue to call for urgent genetic data protection legislation. This is important to ensure public trust in genetic privacy is maintained.
Ongoing concerns around genetic discrimination, and other ethical concerns, warrant an urgent policy response regarding the protection of genetic data.
What are other countries doing?
Globally, several DNA databases have amassed genetic datasets of more than 1 million individuals, including for research purposes and healthcare improvement.
Few databases outside the US have yet to reach the numbers needed to be useful for identification purposes.
However, many countries, particularly in Europe, have started establishing government-funded national databases of gene donor data, including Sweden and Estonia.
The Estonian Biobank is one of the most advanced national DNA databases. It has more than 200,000 donor samples.
With a population of around 1.3 million people, the biobank represents around 15% of the entire country’s population. And Estonian legislation currently prohibits the use of donor samples for law enforcement.
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In contrast, the UK Biobank, doesn’t have specific legislation controlling its operation. It only allows law enforcement agencies access if forced to do so by the courts, leaving open the possibility of access under a court-ordered warrant.
The biobank currently has samples from around 500,000 individuals, but plans to collect at least 1 million more in future.
In Australia, accessing DNA testing is now easier than ever. But those accessing it through US-based companies, or uploading their data to US-based databases, should be aware of the potential uses of their genetic information.
And as we moves into an era of genomic medicine, urgent policy attention is required from the Australian government to ensure public trust in genomics is maintained.
Jane Tiller, Ethical, Legal & Social Adviser – Public Health Genomics, Monash University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
Why are some Americans changing their names?
Kirsten Fermaglich, Michigan State University
In 2008, Newsweek published an article on then-presidential candidate Barack Obama titled “From Barry to Barack.”
The story explained how Obama’s Kenyan father, Barack Obama Sr., chose Barry as a nickname for himself in 1959 in order “to fit in.” But the younger Barack – who had been called Barry since he was a child – chose to revert to his given name, Barack, in 1980 as a college student coming to terms with his identity.
Newsweek’s story reflects a typical view of name changing: Immigrants in an earlier era changed their names to assimilate, while in our contemporary era of ethnic pride, immigrants and their children are more likely to retain or reclaim ethnic names.
However, my research on name changing suggests a more complicated narrative. For the past 10 years, I’ve studied thousands of name-changing petitions deposited at the New York City Civil Court from 1887 through today.
Those petitions suggest that name changing has changed significantly over time: While it was primarily Jews in the early to mid-20th century who altered their names to avoid discrimination, today it’s a more diverse group of people changing their names for a range of reasons, from qualifying for government benefits to keeping their families unified.
Jews hope to improve their job prospects
From the 1910s through the 1960s, the overwhelming majority of people petitioning to change their names weren’t immigrants seeking to have their names Americanized.
Instead, they were native-born American Jews who faced significant institutional discrimination.
In the 1910s and 1920s, many employers wouldn’t hire Jews, and universities began establishing quotas on Jewish applicants. One way to tell if someone was Jewish was his or her name, so it made sense that Jews would want to get rid of names that “sounded” Jewish.
As Dora Sarietzky, a stenographer and typist, explained in her 1937 petition:
“My name proved to be a great handicap in securing a position. … In order to facilitate securing work, I assumed the name Doris Watson.”
Since most petitioners were native-born Americans, this wasn’t about fitting in. It was a direct response to racism.
The changing face of name changing
While 80 percent of petitioners in 1946 sought to erase their ethnic names and replace them with more generic “American-sounding” ones, only 25 percent of petitioners in 2002 did the same. Meanwhile, few name changers in the past 50 years have actually made a decision like Barack Obama’s: Only about 5 percent of all name change petitions in 2002 sought a name more ethnically identifiable.
So why, in the 21st century, are people feeling compelled to change their names?
The demographics of name change petitioners today – and the reasons that they give – suggest a complicated story of race, class and culture.
Jewish names disappeared in the petitions over the last two decades of the 20th century. At the same time, the numbers of African-American, Asian and Latino petitioners rose dramatically after 2001.
On the one hand, this reflected the changing demographics of the city. But there was also a marked shift in the class of petitioners. While only 1 percent of petitioners in 1946 lived in a neighborhood with a median income below the poverty line, by 2012, 52 percent of petitioners lived in such a neighborhood.
Navigating the bureaucracy
These new petitioners aren’t seeking to improve their educational and job prospects in large numbers, like the Jews of the 1930s and 1940s.
Instead, today’s petitioners seem to be trying to match their names with those of other family members after a divorce, adoption or abandonment. Or they’re looking to fix bureaucratic errors in their records – the misspelled or mistaken names that were long ignored, but have increasingly become major problems in the 21st century.
In the wake of Sept. 11, the nation’s obsession with security translated to an increased anxiety surrounding identity documents. This anxiety seems to have particularly burdened the poor, who now need the names on their birth certificates to match drivers’ licenses and other documents in order to get jobs or government benefits.
Roughly 21 percent of petitioners in 2002 sought to correct errors on their vital documents, while in 1942, only about 4 percent of petitions had been submitted to change a mistake on an identification document.
“When I apply for Medicare premium payment program,” one petitioner explained in 2007, “they denied it because my name doesn’t match my social security card.”
Why change your name if it won’t help?
There’s also another key difference between today and the early 20th century: limited upward mobility.
Even though multiple studies have shown that people with African-American-sounding names are more likely to face job discrimination, poor African Americans in Brooklyn and the Bronx aren’t getting rid of their African-American-sounding names.
Perhaps this is because poor or working class people in 21st-century America have fewer possibilities for upward mobility than there were for Jews in the 1940s working as clerks, salesmen and secretaries.
So even if having an ethnic-sounding name might hinder middle-class African Americans’ ability to find a better job, there’s less of an incentive for poor people of color to change their names.
Racism against Arab-Americans
There is one striking exception, and it demonstrates the powerful role discrimination continues to play in American society.
After Sept. 11, there was a surge of petitions from people with Arabic-sounding names.
Their petitions were achingly similar to those of Jews in the 1940s, though many of these newer petitioners were more open about the hatred they faced:
“Prevailing attitudes and prejudices against persons of Arabic descendancy have been adversely affected as a direct result of the terrorist attacks of Sept. 11, 2001,” one petitioner wrote. “Petitioner wishes to change his name to a less demonstratively Muslim/Arabic first name.”
By 2012, however, petitioners with Muslim or Arabic names had stopped changing their names in large numbers. That probably doesn’t have anything to do with a more tolerant society. Instead, in 2009, the New York City Police Department began conducting surveillance into New York’s Muslim and Arab communities using Civil Court name change petitions, sending the message that the act of changing your name might make you as much of a suspect as keeping it.
Although there has been substantial change in the name change petitions over the past 125 years, there’s one lasting lesson: Name changing is not a simple story. It hasn’t moved smoothly from an era in which immigrants simply wanted to fit in, to an era in which diversity is welcome.
Instead, name changing illustrates that racial hatred and suspicion have been a lasting presence in American history, and that intertwined definitions of race and class are hardening – and limiting – the opportunities of people of color.
Kirsten Fermaglich, Associate Professor, Michigan State University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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