Australian Government and 'My Health Record' Coming to You in 2018

Ruth

The Living Force
The Australian Government is launching a new national database of all it's citizens health records. Personally I think that's a massive intrusion into my privacy. But then, I'm not at all trusting in Government beneficence just because they say it's so. They naturally have to offer a 3 month 'opt out' period, which I suppose they hope that people won't bother with.

What is My Health Record?

from: Opt-out period for My Health Records announced
Opt-out period for My Health Records announced
By Kate Aubusson
14 May 2018 — 6:02pm

Australians who don't want a personal electronic health record will have from July 16 to October 15 to opt-out of the national scheme the federal government announced on Monday.
Every Australian will have a My Health Record unless they choose to opt-out during the three-month period, according to the Australian Digital Health Agency.
The announcement follows the release of the government’s secondary use of data rules earlier this month that inflamed concerns of patient privacy.
Under the framework, medical information would be made available to third parties for public health and research purposes from 2020 unless individuals opted out.
Commercial organisations can apply for access to the data but must prove it is in the public interest.
Over five million Australians currently have a My Health Record, which provides patients with a summary of their medical information, including allergies, conditions, medications and test reports, that they can access online and share securely with their clinicians.

They already have something called 'MyGov' which links multiple departments with each individual.

About myGov
myGov is a secure way to access government services online with one login and one password.
One username and password for government services
You can link these government services to your myGov account:
  • Medicare
  • Australian Taxation Office
  • Centrelink
  • Australian JobSearch
  • My Health Record
  • My Aged Care
  • Child Support
  • Department of Veterans' Affairs
  • National Disability Insurance Scheme
  • Victorian Housing Register Application
One Inbox for your important notices
myGov Inbox will keep your letters, statements and messages safe, secure and in the one place. You can get notices from:
  • Medicare
  • Australian Taxation Office
  • Centrelink
  • Child Support
  • Department of Veterans' Affairs
  • National Disability Insurance Scheme
One place to update your details with government departments
You can update your address and contact details in your myGov account and your changes will also be made with your linked member services. Member services that participate in Update Your Details are:
  • Medicare
  • Australian Taxation Office
  • Centrelink
  • Australian JobSearch
ABN and myGov
If you have an ABN, you can connect it to your myGov account. You can then Manage ABN Connection
 
Genealogy and DNA casualties of GDPR – farewell to World Families Network, Ysearch and Mitosearch
Saturday, 19 May 2018
GDPR%2Bscreenshot.jpg

On 25th May GDPR – the General Data Protection Regulation – will come into force in the European Union. Although the UK is leaving the European Union in 2019, the legislation will also apply to the UK and will be enshrined in UK law through the new Data Protection Bill, which is currently going through Parliament. Although this is an EU regulation, it applies to companies and organisations worldwide which have customers or members in the EU, though it is not at all clear how the EU will be able to enforce the regulation in practice in countries over which it has no jurisdiction. Nevertheless, most big companies outside the EU are taking the legislation seriously and it has already had the benefit of encouraging large American companies like Facebook and Google to improve their previously lax attitudes to privacy.

However, while the aims of GDPR are sound, the legislation is hitting small companies and volunteer organisations particularly hard. Valuable volunteer time is being taken up in interpreting and enacting the requirements. GDPR sets a high bar for consent, and all consents have to be GDPR compliant. Although fresh consent is not always necessary, some organisations have decided to take no chances and have sought renewed consent regardless. Like everyone else, I have been bombarded with e-mails from companies and organisations asking me to give consent to receive e-mails and newsletters that I've already asked to receive. There have been endless other e-mails informing me of updated privacy policies. With the best will in the world I simply do not have the time or inclination to read all the fine details of these thousands of new policies, which rather defeats the object of the requirement for informed consent.

Some people have decided that GDPR is not worth the effort:
There have been two big casualties in the world of genetic genealogy.

World Families Network
World Families Network, a website run by Terry Barton, will be shutting down on 23rd May. Terry decided that the "ambiguity and uncertainty of the bureaucratic requirements" of GDPR "are just more than we care to deal with". See here for the full text of Terry's statement. Terry was acting as administrator for 750 Family Tree DNA projects. These will now all be hosted directly on the FTDNA website, but the pedigree information accumulated over many years will be lost unless new admins can be found to take over.

Wayne Kaufman has kindly compiled a spreadsheet with a list of all the projects available for adoption. You can access the spreadsheet from this link:
worldfamilies_only_groups.csv

If you are interested in taking over one of these projects send an e-mail to Terry at World Families or write to FTDNA.

Ysearch and Mitosearch
Ysearch and Mitosearch were set up by Family Tree DNA as public databases where DNA results could be uploaded from any testing company for comparison purposes. Neither site has been maintained for several years now and it is perhaps no surprise that GDPR has prompted FTDNA to shut both sites. Ysearch was also controversially used to identify suspects in criminal investigations, which on three occasions led to the false incrimination of an innocent person. Here is the text of the e-mail that was sent out to Ysearch and Mitosearch customers:

Dear Valued Ysearch & Mitosearch Members,
On May 24th, 2018, our free, public genetic-genealogy databases, ysearch.org and mitosearch.org, will no longer be accessible as a result of the EU General Data Protection Regulation (GDPR) going into effect on May 25th.​
As the founders of the direct-to-consumer genetic genealogy industry, we did not make this decision lightly. We believe it is necessary given the resources it would take to make both sites GDPR compliant. The current environment regarding DNA privacy as well as recent events in the news, particularly DNA databases being utilized to solve cold cases, were also considerations, but the rigorous requirements of GDPR would have prompted this action irrespective of current events.​
User privacy policies across all of the major consumer genetic-genealogy service providers have become a topic of national conversation, and it is our goal to ensure that our privacy policies continue to meet or exceed industry norms.​
We encourage you to continue your journey of discovery with us on FamilyTreeDNA, and we thank you for your participation in “citizen science” over the years.​
Sincerely, FamilyTreeDNA​
The vast majority of DNA results on Ysearch and Mitosearch were contributed by Family Tree DNA customers. FTDNA now monopolise the Y-DNA and mtDNA testing market and are the only company that provides a matching database for Y-DNA and mtDNA. However, Ysearch and Mitosearch also hosted Y-DNA and mtDNA results from customers of other testing companies that have since ceased operations. Relative Genetics, DNA Heritage and GeneTree closed down many years ago. Ancestry stopped offering Y-DNA and mtDNA tests in 2014. Oxford Ancestors has announced that it will be shutting down this summer. Although Oxford Ancestors have not mentioned GDPR, it is likely to have been a precipitating factor in their decision.

With the closure of Ysearch and Mitosearch the DNA results from these other testing companies will no longer be accessible anywhere for comparison purposes. DNA Heritage was acquired by Family Tree DNA and customers were given the option of transferring the results to FTDNA free of charge. People who tested with a Sorenson Lab (AncestryDNA, GeneTree and the Sorenson Molecular Genealogy Foundation) can take advantage of FTDNA's Y-DNA transfer programme. Customers of other testing companies will need to get re-tested at Family Tree DNA if they wish to receive matches. Unfortunately, many of the results uploaded to Ysearch and Mitosearch will be lost forever because the participant has either passed away or is no longer active.

Preservation of DNA records
We as a genealogy community need to do a better job of preserving our DNA records. If you are interested in helping to find a solution please join the new Facebook group Committee for the Preservation of DNA Records.
 
In case any of the Ozzies want to opt out, this is the link where you can register your interest to do so (the process will only open on July 15th and run until the end of October):

_Find out more about opt-out

Sorry, tried to deactivate the link, but it doesn’t work - maybe one of the mods can do that and let me know how to go about it ...
 
Thanks for the heads up Ruth & nicklebleu- I had no idea about this. I know the govt. have a national vaccination database for some years now. It wouldn't surprise me if they aren't already keeping tabs on us via our Nedicare cards. In any case, I'll sign up for the opt out notification process.
 
The Australian Government is launching a new national database of all it's citizens health records. Personally I think that's a massive intrusion into my privacy. But then, I'm not at all trusting in Government beneficence just because they say it's so. They naturally have to offer a 3 month 'opt out' period, which I suppose they hope that people won't bother with.

Well, well! We will have something similar in Québec next week.

Translated by DeepL:

QUEBEC, May 18, 2018 /CNW Telbec/ - The Minister of Health and Social Services, Gaétan Barrette, today announced that users across Quebec will have access to Carnet santé Québec as of Tuesday, May 22, 2018. This simple, secure and reliable online service gives you free access to your health information at any time.

With a secure authentication service, users will be able to:

consult their list of medications received in pharmacies;
consult their sampling results;
consult their medical imaging reports;
register at the Family Physician Access Centre and modify their registration if necessary;
make an appointment online with a family doctor using the Rendez-vous santé Québec service.

Over time, other services will be added to those already available, including, starting in September 2018, the amount paid to the physician when he or she is paid on a fee-for-service basis. In December 2018, subject to legislative changes, the evolution of requests for surgery will also be made available and, finally, at the conclusion of the next call for tenders, the Health Library.

Translated with www.DeepL.com/Translator
 
Well, well! We will have something similar in Québec next week.

Translated by DeepL:
Looks like Australia has something in common with Quebec. Does the rest of Canada have the same type of thing? Maybe we are the 'test subjects' for Government Totalitarianism?
 
Thanks for the heads up guys, I will be opting out for sure!! Can't say I'm surprised by this at all!!
 
Looks like Australia has something in common with Quebec. Does the rest of Canada have the same type of thing? Maybe we are the 'test subjects' for Government Totalitarianism?

I don't know for the rest of Canada Ruth.
 
As popular as a rattle snake in a lucky dip, as the saying goes.

The web site crashed, when a whole bunch of people tried to 'opt out' all at once. Not everyone in Australia was impressed by the idea, or so it seems. And, this is what happens when only a minority of people in a country tried to access this system. Do a Google search 'census crash australia' for another example (which the Government tried to blame on overseas interference, at the time, but which was totally predicable - as in the US's experience with Obamacare).

This may be an example of what occurs when Governments try to do something behind people's backs and without their consent. It should have been an 'opt in' scheme, not the other way around. But, I guess governments won't get enough 'control' (of information) from doing it like that?

You need to think about doing this today

I wonder if three months is long enough for everyone with a brain to 'opt out', considering how difficult the process is? The media has been quite silent on this system failure.
 
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