If you’ve given your DNA to a DNA database, US police may now have access to it


DNA database giant Ancestry lets members access international records including the convict and free settler lists, passenger lists, Australian and New Zealand electoral rolls and military records.
Patrick Alexander/Flickr, CC BY

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.The Conversation

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.

Migrant communities keep our cemeteries alive as more Anglo-Australians turn to cremation


Would you prefer to be buried or cremated?
Shutterstock

Wilfred Wang, Monash University; Gil-Soo Han, Monash University, and Helen Forbes-Mewett, Monash University

The Australian society has changed significantly since cemeteries in Victoria were planned and designed 150 years ago. But there haven’t been any major redevelopment or review of the community’s changing requirements for what happens to our bodies when we die.

The Australian population is ageing, with around 15% of Australians aged 65 and over in 2017. About a third of older people in Australia were born overseas, with most coming from a non-English speaking background.




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This has implications for our rituals for death and memorialisation, as well as for existing and future cemeteries.

In a new collaborative research project taken from survey responses and in-depth interviews with members of different communities, we found cemeteries have ongoing significance to Australians, although its meaning and function are changing.

More than half of the 380 survey respondents said they still visit a cemetery once a year or more, and 23% visit once a month or more. But the interview data reveal a more complex and dynamic picture.

People from CALD communities believed Australia’s cemeteries are greener, better managed and less scary than those in their original countries.
Shutterstock

We found people from culturally and linguistically diverse (CALD) communities tend to visit the cemetery more than their Anglo counterparts, and prefered to be memorialised in cemeteries to preserve a sense of belonging.

Anglo-Australians, on the other hand, generally prefer to be cremated and often choose to scatter ashes in places other than a cemetery. In one participant’s case, that meant scattering remains in a French vinyard, an island volcano and their local beach.

Calling Australia home

The cemetery remains an important site of cultural ritualisation and expression to most CALD interviewees.

Interviewees from the CALD communities – especially those from an Asian cultural background – had positive experiences with cemeteries in Australia. When comparing Australian cemeteries with those in Malaysia, Jenny (60s, Malaysian Chinese) said:

In Malaysia, the cemeteries are not like this […] they are all overgrown […] and we were taught that graves are places where the gangsters will hide out, the thieves will hide out, people will come and rob you, so we don’t go.

The perceptions that Australian cemeteries are more open, greener, better managed, more accessible, and not as scary as those in their original countries made many Asian migrants felt more willing to visit a cemetery here.

Besides the aesthetic contrast, for many CALD interviewees, the cemetery offers a space that embraces their culture and gives them a sense of belonging in Australia.

Tony (30s, Tongan) would love to have a traditional Tongan way of burial in Australia, which involves bone picking (removing the bones from the grave), and grave re-using for future generations. These traditions strengthen their inter-generational connections.

Australian regulations mean these ritual practices are not possible here. But Tony was prepared to make a compromise.

Instead of following the ritual, he insisted on being buried in Australia because his children and family live in Australia. The inter-generational connections can prevail here. They call Australia home.




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Participants from the CALD communities generally shared Tony’s idea. They believed having a physical place in Australia (either a grave or a plot for the ashes) gave them a sense of belonging and settlement for themselves and their families.

A library of local history, not a ‘resting place’

On the other hand, people from an Anglo-cultural background no longer see cemeteries as just a space for memorialisation and mourning. From our interviews, many see it as a “library” or a “depository” of the local history and family genealogy.

Cemetery visits, in this sense, contrast between fulfilling one’s cultural duty of memorialisation, and obtaining historical knowledge for self-learning, reflection, and development.

Alfred’s (50s, Anglo-Australian) cemetery visits had been driven by his interest in his family history. Family history can give someone “an explanation” about the kind of person they are, and:

how the attitudes were passed on to the next generation so you can learn a tremendous amount, multi-generation through a family history search.

Yet, while many Anglo interview participants appreciated the historical and cultural values of the cemetery, they became less enthusiastic when considering the cemetery as their “resting places”.

We believe this corresponds with the nationwide trend since 2012 of more Australians preferring cremation to traditional full-body burial.

We found 56% of our survey respondents preferred cremation, 32% indicated preference for a ground burial and 12% were undecided.

In any case, our research indicated many people prefer to be memorialised at a place or site that’s meaningful. This might include their favourite beach or the park where they spent time with their children, rather than in a cemetery, which is outside their social, family spaces.




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Tina (50s, Anglo-Australian) embarked on a global journey to fulfil her late husband’s wishes as he wanted his cremation remains (called cremains) scattered in three locations he loved: a vinyard in Burgundy, France, a volcano in Reunion Island, and the family’s local beach in Williamstown, Melbourne. Tina did all three.

Planning your body disposal

More people have started pre-planning what happens to their body when they die. The quantitative data shows 64% of people have already discussed their end of life-related wishes with close friends or family, and 11% have pre-paid for a funeral service.

In an earlier study, we found Chinese Australians, for example, tended to pre-purchase their funeral services and grave sites before they died.

As previously mentioned, this might enhance their sense of cultural belonging in Australia.

On the other hand, people from an Anglo cultural background would “talk about it”, but few actually “lock things in”.

Interviews from the present study revealed people with an Anglo cultural background had a strong desire of “flexibility”. Many didn’t wish to decide at the time of their interview, as they were still exploring possibilities and opportunities outside the conventional modes of body disposal and memorialisation.




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In other words, the idea of being memorialised outside the cemetery was an emerging rather than established idea.

Understanding the contemporary and future funeral needs of the culturally diverse Australian population is important to policy makers, as well as the cemetery and funeral industries.

With increasingly limited access to usable land suitable for burial practices – particularly in metropolitan areas – planning must consider the funeral rites of the ageing population and incoming migrant groups. They are likely to make end of life choices in the coming decades.The Conversation

Wilfred Wang, Lecturer, Communications & Media Studies, Monash University; Gil-Soo Han, Associate Professor, Communications & Media Studies, Monash University, and Helen Forbes-Mewett, Senior lecturer, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

How DNA ancestry testing can change our ideas of who we are


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We’ve underestimated the extent of mixing between ancestral groups throughout human history.
from www.shutterstock.com

Caitlin Curtis, The University of Queensland

Have you ever wondered who you are or where you come from?

I think it’s a fundamental human desire to want to know this.

One way we’re seeing this curiosity play out is in the rise of the at-home DNA ancestry business. You’ve probably seen the ads for tests like 23andme and Ancestry DNA: you spit in a tube, and then receive a report breaking you down into neat little slices in a pie chart telling you that you’re, say, 30% German and 70% English. As a population geneticist, I find this fascinating.

But how does our collective interest in ancestry testing interact with our ideas and conversations about race?




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‘No borders within us’

Earlier this year, a Mexican airline, Aeromexico, ran a tongue-in-cheek ad campaign, called “DNA Discounts” with the slogan “there are no borders within us”. For the ad campaign they gathered a group of North Americans who were willing to take a DNA test and get their results on camera. This group contained some members with, let’s just say, a somewhat negative view of Mexico.

Do you want to go to Mexico?

In the ad, the airline offered rewards to these people based on their DNA results, in the form of a discounted airline ticket to Mexico. The size of the discount depended on the amount of Mexican ancestry. If their test showed 15% Mexican ancestry, that meant a 15% discount.

The footage of people getting their results on camera is pretty funny, and some of them seemed somewhat surprised, and maybe even upset about their reported ancestry. More than half of those tested appeared to have Mexican ancestry, even though they weren’t aware of it.

The slogan “there are no borders within us” has an element of political commentary related to Donald Trump’s border wall. But the ad also teaches us two important things.

It shows how DNA testing can challenge not just our ideas of race and identity, but our notion of being. Your genetic ancestry might be completely different from your cultural identity. Just ask the folks in the ad.

Beyond this, it also highlights how mainstream this kind of science has become, and how much DNA ancestry testing has entered into pop culture.




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Recent, dark past

I think we humans have always been interested in our ancestry, but it hasn’t always been a healthy interest – sometimes it’s been much darker and more sinister. And we don’t even have to look too far into the past to see that.

The eugenics movement was part science and part social engineering, and based on the idea that certain things – such as being poor, lazy, “feeble-minded” or criminal – were actually traits that were inherited in families. These traits were often linked to certain ancestries or racial groups using biased methodology.

Eugenics was the idea that humanity could engineer a better future for itself by identifying and regulating these groups using science and technology.




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In the United States in the early 20th century, eugenics became a recognised academic discipline at many prestigious universities – even Harvard. By 1928, almost 400 colleges and universities in America were teaching it.

In 1910 the Eugenics Record Office was set up to collect ancestry data, literally door to door. It then used this data to support racist agendas and influence things like the 1924 Immigration Act to curb immigration of southeastern Europeans, and ban most Asians and Arabs altogether.

Although we may think of eugenics as something linked with Nazi Germany in World War II, Hitler based some of his early ideas about eugenics on these academic programs in the US. There was a fear of “pollution” of the purebred genetic lineage, and that the “inferior” races would contaminate the “superior” race. Many Nazi defendants at the Nuremberg trials claimed there wasn’t much difference between the Nazi eugenics program and the ones in the US.

Racism with flawed science

The events of that time are still relevant now. More than seven decades have passed and we’re seeing the rise of far-right groups and ideologies – the world of Trump, and the return of restrictive immigration policies.

We’re seeing a mainstreaming of ideas about race that we rejected not long ago. We’re once again seeing the science of genetics being misappropriated to support racist agendas.




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Late last year, the New York Times reported on a trend among white supremacists to drink milk. Most people of northern European ancestry have a version of a certain gene, called a lactase gene, that means they can fully digest milk as adults. This is due to a genetic mutation several thousand years ago, around the time of the first cattle herders in Europe.

The article described how people from the far right have taken this scientific result and run with it – producing bizarre YouTube videos in which people chug milk from 2-litre containers, swigging it and throwing it around in celebration of their supposed “genetic superiority” – and urging people who cannot digest milk to “go back”. Comedian Stephen Colbert even picked up on this story (in his words: “lactose is their only form of tolerance”).

The white supremacists took this bit of science and twisted it to suit their needs. But what they have ignored is research showing that a similar version of this gene evolved among cattle breeders in East Africa too.

DNA does not define culture

It’s not just popular culture: DNA ancestry has also entered political culture.

The right-wing Australian nationalist One Nation recently called for DNA ancestry tests as a requirement to prove Aboriginal identity to access “benefits”. I don’t want to give this dangerous idea any more oxygen, and as a geneticist I can tell you it won’t work.

Cultural identity is much more than simply what is in our DNA. Aboriginal communities are the ones who determine who is and who is not Indigenous. I think this episode highlights a worrying trend for genetic tests to be seen as the ultimate decider of race and identity in public debates.




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So how does the marketing of the DNA companies themselves influence our thinking about ancestry?

These ancestry companies use the language of science in their marketing, and present their results as being highly scientific – which people interpret as meaning accurate and factual. The process of estimating ancestry from DNA is scientific, but people may not realise it can also be a bit of a blurry process, and actually more of an estimate.

When you look at your slice in the pie chart and it says 16% German, it is not a fact that you are 16% German. It’s an estimate, or an educated guess, of your ancestry based on statistical inference.

I think representation of our ancestries in pie charts is not helping our conversations.

Twins got different results

Recently, two identical twins put five DNA ancestry companies to the test, and this provides a really interesting look at how this process works.

The raw data for each twin was more than 99% identical, which shows that the way the companies produce the raw data is indeed quite accurate.

The shocking thing was that the companies provided each twin with noticeably different ancestry estimates.

From one company, the first twin got 25% Eastern European, and the second got 28%. Just to be clear, this shouldn’t happen with identical twins because they have the same DNA.




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Even more surprising, one company said the twins were 27-29% Italian, but another said they were 19-20% Greek. A lot of this difference would be based on the size of the databases that the companies use as references and who is in the databases, and – very importantly – who has been left out of the databases. These factors would be different between the different companies, and change through time.

So the results you get now could be different to the results you might get in, say, six months when the databases are updated.

Estimating our ancestry is hard, and the main reason it is hard is because our ancestry is much more mixed up than some people might have thought. It’s not really so clear-cut as a pie chart might suggest. The statistics are blurry because our populations are blurry.

The bigger picture that’s emerging from DNA ancestry testing is that we’ve underestimated the extent of mixing between ancestral groups throughout human history.

Looking at the pie chart might give you the impression that there are discrete borders within you and boundaries between your different ancestries, but as Aeromexico so eloquently put it, “there are no borders within us”.


This article is an edited version of a story presented on ABC’s Ockham’s Razor and delivered at the World Science Festival, Brisbane in March 2019.The Conversation

Caitlin Curtis, Research fellow, Centre for Policy Futures (Genomics), The University of Queensland

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Toadbollock, Dustiberd and Lytillskyll: historian on what names can tell us about everyday medieval life

File 20190124 135160 ronhls.jpg?ixlib=rb 1.1

British Library MS Harley 4379, fol. 182v

Catherine Clarke, University of Southampton

Let me take you for a stroll down the high street of 12th-century Winchester – one of the great cities of medieval England – and introduce you to a few of the locals. Here’s Alberic Coquus, the cook, and over there is Ainulf Parcheminus, the parchment-maker. They are chatting to Luuing Scalarius (he builds ladders). Godric Softebred, who has his shop just down the road, is a baker – but his neighbours giggle behind his back and give his wife pitying glances.

You can’t miss Robert Crassus (“big, fat”), but I would hesitate to introduce you to Alfred Taddebelloc (“Toadbollock”) and you probably won’t want to stand too close to Radulf Scitliure (“shit-liver”, evidently cursed with chronic diarrhoea or some other stomach complaint). And perhaps we should simply cross the street to avoid me having to mention Godwin Clawecuncte (use your imagination) at all.

We know these names – with the intriguing clues they give about the people who carried them – from the two 12th-century surveys of Winchester property collectively known as the Winton Domesday. So, what’s in a medieval name? What can they tell historians about long-forgotten lives and individuals in the past? And why won’t you find anyone with the surname Toadbollock today?

These names don’t work in quite the same way as modern surnames. These (usually non-hereditary) medieval bynames add further detail to personal names, noting where someone was from, what job they did and even what they looked like or how they behaved.

Chronicle of everyday life in the 12th century: Winton Domesday.
Society of Antiquaries of London

Bynames often reflect physical attributes, such as those of Winchester’s Alestan Hwit (“white”), who probably had a fair complexion, or Alimer Longus (“tall”). You wouldn’t want to see Winchester’s Peter Agnell (“little lamb”) get into a fight with Godwin Bar (“boar”).

Many medieval historians have their own favourite names they’ve discovered during their research: Professor Anthony Bale of Birkbeck, University of London, mentions Tom Dustiberd (“dusty beard”) and the likely somewhat dishevelled Adam Charrecrowe (“scarecrow”), as well as Walter Boltuprith (“bolt-upright”).

Other bynames indicate trades and occupations. Richard Farrier was keeper of the king’s horses at Chester in the summer of 1283. Records show that he purchased cut grass for 20 horses, including that of the queen, and also for ten “great” horses arriving from Caernafon. He bought horseshoes, bridles, long ropes of hemp to make reins, as well as plenty of horse salve.

Other occupational bynames hint at less happy vocations. John Pynchware and his son worked as shoemakers in 15th-century Chester. But with a byname like that, how well did their shoes fit? Professor Matthew Davies of Birkbeck points to an apprentice tailor in London, 1486, named Rowland Lytillskyll. He doesn’t seem to have made it in his chosen career.

Rebel, rebel

Bynames can also tell us about ethnic identities. Several people in 12th-century Winchester were called “Iudeius” – members of what would become the city’s thriving medieval Jewish community. Godwin Francigena, with his English personal name and byname meaning “Frenchman”, reminds us what a cosmopolitan, multicultural European city this was.

But sometimes bynames point to political and social tensions. Dr Adam Chapman, at the Institute for Historical Research, shares the example of the 14th-century Welshman known as Madog Drwgwrthgymro: literally “bad to Welshmen”, but translated by the historian Robert Rees Davies more provocatively as “Saxon-lover” – a smear based on perceived disloyalty and ethnic betrayal.

Another Welshman, William Cragh, features in medieval records as an outlaw –- or freedom fighter, depending on your viewpoint – who rebelled against Norman rule and was hanged, but came back to life (that’s another story. He cuts less of a romantic, heroic figure when we translate his Welsh byname – perhaps “Scabby William” had suffered some kind of disfiguring disease as a child. Still, he was more likely known by his fellow Welshmen by the patronymic “ap Rhys” (“son of Rhys”).

Calling card

Somewhere in my own ancestry, someone probably worked as a clerk. Adam Chapman’s forebears possibly worked in a shop (“ceap-man” meant merchant, from the Old English “ceapan” meaning to sell or buy). Some bynames just stick around: Delia Smith doesn’t work in a forge, and Mary Beard doesn’t have one. But others, unsurprisingly, don’t outlast their original owners.

We see similar revisions when it comes to less appealing place names: just as William Cragh probably preferred being called William ap Rhys, the place where he was hanged in Swansea was renamed, in the late 19th century, from Gibbet Hill Road to the more estate agent-friendly North Hill Road.

So, why are medieval bynames so useful and engaging? For a start, some of them are hilarious – and they give us a humorous way into a seemingly remote and distant historical past. But, more than that, they offer a sense of connection with a real individual and a characteristic which defined them within their own, contemporary local community.

These medieval names also give us glimpses into something the big chronicles, charters and official history books often don’t tell us much about: ordinary people and their ordinary, colourful lives.The Conversation

Catherine Clarke, Professor of Medieval Literature and Culture, University of Southampton

This article is republished from The Conversation under a Creative Commons license. Read the original article.