Digging your own digital grave: how should you manage the data you leave behind?


Arash Shaghaghi, Author provided

Patrick Scolyer-Gray, Deakin University; Arash Shaghaghi, Deakin University, and Debi Ashenden, Deakin University

Throughout our lifetimes we consume, collate, curate, host and produce a staggering quantity of data – some by our own hand, some by others on our behalf, and some without our knowledge or consent.

Collectively, our “digital footprints” represent who we are and who we were. Our digital legacies are immortal and can impact those we leave behind.

Many of us take steps to secure our privacy while we’re alive, but there’s mounting evidence that we should be equally concerned about the privacy and security risks of our “data after death”.

Reincarnation as data

It might be tempting to think of data after death as inconsequential – after all, we’ll no longer be around to worry about it. However, Facebook and Instagram both support static “memorial” accounts for the deceased. We also know memorial pages can play an important part of the grieving process.

Facebook has around 300 million accounts belonging to the deceased. Research suggests this figure could rise into the billions within decades.

However, these platforms’ terms of service don’t address how the data of deceased users is retained, processed or shared.

There is now even more cause for concern with the emergence of platforms like TikTok and Likee, which have both proven to be particularly liable to expose the personal lives of millions online.

This raises important questions, such as:

  • what are platforms such as Facebook doing with the data after death they collect?

  • is it ever deleted?

  • could it be sold or otherwise monetised?

  • what assurances do we have our data will continue to be hosted by those providers after death?

  • if not, who will be able to access and manage our data in the future?

In 2012, a teenage girl died after being hit by a subway train in Berlin. Her parents had her Facebook credentials and wanted to access her account to determine whether she had committed suicide. After six years of legal battles, the parents were awarded a court order and finally given access to their child’s “memorial” Facebook account data.

We all have skeletons in the closet

COVID-19 has completely changed our internet use patterns. The unplanned transition to working from home has blurred the boundaries between our professional and personal lives.




Read more:
Why some governments fear even teens on TikTok


Consequently, personal information is now more likely to be exchanged over services such as Microsoft Teams. Many users may choose to store confidential information on personal cloud services for the sake of convenience.

With these changes in behaviour, new vulnerabilities have emerged. When a user dies, it’s now more important than ever personal and otherwise sensitive information is automatically identified and secured.

Hands typing on a laptop
Working remotely or in networked teams can make data less secure.
John Schnobrich/Unsplash, CC BY

Colleagues of the departed may forget to revoke access credentials, which can then be used to steal intellectual property. Embarrassing email exchanges that belonged to the dead can damage reputations, and sensitive information can negatively affect entire businesses and potentially ruin lives.

In 2016, a Twitter account belonging to the well-known US journalist David Carr was hacked by a sexting bot a year after his death. Earlier, in 2010, 16-year-old vlogger Esther Earl died of cancer before she could cancel a tweet she had scheduled for release that left friends and family in shock.

The need for data management after death

Most Australians don’t have a conventional will, so it’s not surprising the digital equivalent hasn’t gained traction.

In collaboration with the Australian Information Security Association (AISA), we surveyed about 200 AISA members to assess their awareness of digital wills and associated Australian regulations that protect users’ security and privacy. Our survey results confirmed that even key decision makers in the field and cybersecurity thought leaders had not considered or prepared for posthumous data risks.

But raising awareness is only part of the battle. There are no national regulatory bodies, rules or standards for service providers to follow when managing the data of the deceased. And in Australia there are no laws or regulations imposing requirements to minimise the risks of data after death.

We need a solution that can resolve issues ranging from moral quandaries about posthumous medical data, to privacy concerns about accessing past digital correspondences.

To be effective, such a solution will require legal and policy recommendations, guidelines and technological adaptations for providers, decision-makers and users. Each aspect will need to be sensitive to context and accommodate for grief and mourning among individuals and organisations. For example, there is often a period of compassionate leave available for employees when members of their immediate family pass away.

Some processes meant to manage data after death already exist, but they need more development. Technological solutions for data after death proposed thus far fall into the category known as privacy-enhancing technologies – tools meant to protect users’ privacy.

Users have been reluctant and slow to adopt privacy enhancing technologies. In part, this is because they don’t allow individuals the ability to control how they manage their privacy risks.The Conversation

Patrick Scolyer-Gray, Research Fellow, Cyber Security, Deakin University; Arash Shaghaghi, Lecturer, Cybersecurity, Deakin University, and Debi Ashenden, Professor of Cyber Security and Human Behaviour, Deakin University

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

Five things to consider before ordering an online DNA test


File 20180404 189824 p1u05b.jpg?ixlib=rb 1.1
DNA testing has its risks, including that you don’t know who will own your genetic data.
Photo by Markus Spiske on Unsplash

Jane Tiller, Monash University and Paul Lacaze, Monash University

You might be intrigued by what your genes could tell you about your ancestry or the health risks hidden in your DNA. If so, you’re not alone.

Fascination with personal genetics is fuelling an explosion of online DNA testing. More than 12 million people have been tested – 7 million through ancestry.com alone. Amazon reported the 23andMe online DNA test kit as one of its top five best-selling items on Black Friday in 2017.

But while online genetic testing can be interesting and fun, it has risks. Here are five things to keep in mind if you’re considering spitting in a tube.

1. Understand the limits of what’s possible

Keep in mind the evidence behind claims a DNA testing company makes. Some companies list the science that backs up their claims, but many don’t.

DNA testing can be used to tell your ancestry and family relatedness quite accurately, but companies claiming to predict wine preferences or children’s soccer prowess from DNA are in the realm of fantasy.

There is also a lack of regulation on this issue to protect consumers.

Genetic testing products like 23andMe are exploding in popularity.
from shutterstock.com

2. Make sure you’re prepared for the information

Genetics can tell us many things, some of which we may not be prepared for. You may go in looking for information on your ancestry, but could find out about unexpected paternity. Or you might discover you’re at risk of certain diseases. Some of these have no cure, like Alzheimer’s disease, which could only leave you distressed.




Read more:
Genetic testing isn’t a crystal ball for your health


Some products can test for genetic changes in the BRCA genes that put you at risk of breast and ovarian cancers. Other online genetic interpretation tools can take raw data from ancestry DNA tests and, for a small payment, provide a wide range of disease risk estimates, many of which have been brought into question by the scientific community.

Think carefully about whether you really want to know all this information, and whether it’s valid, before you proceed.

3. Consider the medical follow-up you might need

If something serious is discovered in your genes, you might need the results to be professionally interpreted, or to have genetic counselling to come to terms with what you’ve learnt.

Some genetic information can be complex and difficult to interpret, and have medical implications for you and your family. Relying on the internet for interpretation is not advised.




Read more:
A little bit of knowledge: the perils of genetic tests for Alzheimer’s disease


Does the DNA testing company offer any counselling or medical services? If not, are you hoping your GP or genetics clinic will provide this? You might find GPs are not adequately trained to understand DNA results, and public genetics services have very long waiting lists. This means you might be left on tenterhooks with a potentially distressing result.

Before you spit into a tube, be prepared for what you might discover.
from shutterstock.com

4. Think how the results may affect your insurance

In Australia, private health insurance can’t be influenced by genetic test results. But life insurance companies can use genetic test results to discriminate against applicants, with little consumer protection. All genetic test results known to an applicant at the time of a life insurance application must be disclosed if requested, including internet-based test results.




Read more:
Australians can be denied life insurance based on genetic test results, and there is little protection


Once you have a result that indicates increased risk of disease, the life insurance company may use this against you (by increasing premiums, for instance), even if the scientific evidence isn’t solid. This applies to life, income protection, disability and even travel insurance.

5. Consider who will have access to your DNA and data

Some online genetic testing companies don’t comply with international guidelines on privacy, confidentiality and use of genetic data. Many online testing companies retain DNA samples indefinitely. Consumers can request samples be destroyed, but sometimes have difficulties with this.

Some online testing companies have been accused of selling access to databases of genetic information to third parties, potentially without the knowledge of donors. You might have to plough through the fine print to find out what you have consented to.




Read more:
Take an online DNA test and you could be revealing far more than you realise


The ConversationIn many ways, it is wonderful we now have access to our personal DNA code. However, as always, understanding the limitations and risks of fast-moving medical technology is very important.

Jane Tiller, Ethical, Legal & Social Adviser – Public Health Genomics, Monash University and Paul Lacaze, Head, Public Health Genomics Program, Monash University

This article was originally published on The Conversation. Read the original article.

More Free Google Drive Storage – Act Quickly

If you use the cloud for storage, as I do to a certain extent (or even feel that you may need more online storage in the future), the more free space you have the better. Google is currently offering an increase of storage on Google Drive for simply checking your account security settings. By doing so you will go from 15gb to 17gb of free online storage. Sounds great to me and I have taken up the offer. It may provide you with needed extra space in the future for online storage of family history files.

For more visit:
https://gigaom.com/2015/02/10/check-your-google-security-settings-receive-2gb-of-free-drive-storage/

As memories stay online, social companies like Facebook must find better ways to help grieving families

Gigaom

A Missouri man posted a video on YouTube(s goog) this week, asking “Mr. Zuckerberg” to pass on his late son’s Look Back video, a short movie montage that Facebook(s fb) recently gave to all its users. The man described his plea, which came two years after his 21-year-old son’s death, as a long shot — but it worked.

The YouTube video received more than 1 million views after it received attention on sites like Reddit and BuzzFeed, and Facebook soon responded:

FB screenshot

In response to an email inquiry, Facebook confirmed the man’s story but could provide few additional details. A spokesperson wrote:

With the number of people using our service, it’s often very difficult to act on behalf of one. But John’s story and emotion moved us to take action — so we did. This experience reinforced to us that there’s more Facebook can do to help people celebrate and commemorate…

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Free Guide: Research Your Family Tree Online

The link below is to an article with links to a guide on researching your family tree online (PDF and ePub versions).

For more visit:
http://www.makeuseof.com/pages/research-your-family-tree-online

Records News: New Zealand Sheep-Farmers 1881-1918

The link below is to an article that reports on a new database available online, that of New Zealand Sheep-Farmers from 1881 to 1918. I’m not sure that the database will assist in searching for Kiwi Black Sheep of the family though.

For more visit:
http://www.insidehistory.com.au/2013/08/record-update-new-zealand-sheep-farmers-1881-1918/

Article: Using Geni for Online Family History Research

The link below is to an excellent article outlining the value of Geni, the online family history site.

For more visit:
http://www.makeuseof.com/tag/make-your-own-free-family-tree-online-using-geni/

Article: PeoplePlotr – Creating an Interactive Family Tree

The link below is to an article that looks at PeoplePlotr, an online app that allows you to make an interactive family tree. The article is something of a ‘how to’ article.

For more visit:
http://web.appstorm.net/reviews/portfolio/peopleplotr-create-interactive-family-trees-organizational-charts/