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.

Posts for the Time Being

I thought I’d post a quick update on what is currently happening with me and posts to my Blog. It is a short story really. I live in a town which is a massive tourist destination during the holiday season – especially at this time of year. What this means for me – being reliant on wireless access to the Internet – is real difficulty gaining Internet access. There are so many people in the area, using so many gadgets and the like, that the Internet is locked into a constant traffic jam. It is practically impossible to get Internet access most of the time. You do get the odd time where you can get access, but it is so slow that it is pointless to try and use it. For example – it takes minutes and minutes just for one page of the Blog to load.

I’ll keep trying to access the Net every so often, but it is likely I’ll be unable to post much for the next couple of weeks. There is good news – the number of tourists in the shopping centre here have diminished, which probably means we are heading back to some form of normality.

Research – The Tracing our History Newsletter goes Live

Work is progressing well on the new site and already some sections of the site are going live and working well. I have now got the newsletter section of the site running, along with the first edition of a new newsletter.

The new newsletter is called ‘Research – The Tracing our History Newsletter,’ or ‘Research’ for short. The newsletter archives will be hosted at Scribd, but you will be able to download them from the tracingourhistory.com site via an embedded widget from Scribd. With this widget from Scribd I will no longer need to update the site when adding a newsletter – just simply upload the newsletter to Scribd and the embedded widget updates the site automatically. All very easy.

How can you subscribe to the newsletter? You don’t need to really. If you subscribe to the Tracing our History Blog you will be notified when a new issue of the newsletter is posted and you can then go to the site to download the issue. Those who do not have Internet access will need to let me know (or via someone that does) that they would like to have a hard copy sent to them – or, someone may be able to print them a copy.

Get the first issue of Research at:
http://tracingourhistory.com/newsletter/research.html

Have a peek at the new site at:
http://tracingourhistory.com

Tracing our History: Site Fully Functional

I now have the site back fully functional with what I currently intend to have on it at the moment. There are a number of articles and books that aren’t up yet, as they are yet to be digitalized completely. They are coming.

The family tree (graphics, etc) page is currently up, but no access to the tree exists. There is quite a bit of behind the scenes work being done on the tree which will greatly increase its size and accuracy. The family history book will also be updated once the tree work has been completed. I expect there will be some major advances with some other areas of the site in the coming months also, as more material becomes available.

If you are able to add to the work being done here, please consider getting involved. I would appreciate it greatly, as I am sure future generations of our family will also.

Visit the site at:
http://particularbaptist.com/matthewshistory/index.html

OUT OF STORAGE

 

It should only be a very short time now until all of my property is out of storage and back with me under the one roof – in my own apartment (rental). After more than two years I will soon have everything back out of storage and fully accessible again. This will mean many things, the least of which is not a renewed ability to get at all of my family history research, tools, etc. I’ve been waiting for this for so long.

So the countdown is now on and I should be able to access everything again within 5 to 6 weeks. So not that long to wait now. All of the projects that have been on hold can be back up and running again very soon.

NEWSLETTER DISCONTINUED: BLOG REPLACES IT

The newsletter for ‘Kevin’s Family – Online History Site,’ known as ‘Kevin’s Mailout,’ will be discontinued. In fact, the newsletter’s last issue was back in 2004, so it could be argued that it had already been discontinued and this is a fair argument. I did begin another issue in 2008, but it was never completed.

With the emergence of this Blog, ‘Tracing our History,’ the newsletter seems to be somewhat superfluous, even though there are undoubtedly a great number of family members and friends who don’t have Internet access. Having said that, I don’t believe there was any ‘official’ circulation of the newsletter in hard copy anyhow.

Anything that I would have placed in the newsletter will now be placed on the Blog instead and will not have to wait (possibly years) for the next issue of the newsletter. This seems a far better idea to me and will save a large amount of work for me also. The energy used in putting together a newsletter can now be placed into actual research and web site development, which will also be a far better result I think.

The archives of the newsletter will still be available via the web site at:

http://particularbaptist.com/matthewshistory/newsletter.html