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Like, Comment, Share: Should You Share Your Genetic Data Online?

Credit: kentoh/adobe

Credit: kentoh/adobe

By Kathleen Gray

The culture of sharing our private details online is extending to health and ancestry data generated by genome testing. What are the benefits and what are the risks?

Sharing your personal facts and feelings with friends and strangers is a way of life for many people in online social networks. Think about the increase from one million to one billion Facebook users over the past decade, and the many other social media sites that have hundreds of millions of users. But who would want to share their personal genomic data this way, and why?

Testing Times

At least a dozen online personal genomic testing services now market directly to consumers over the internet: 23andMe, AncestrybyDNA, EasyDNA, FamilyTreeDNA, Genetrack, GTLDNA and Mapmygenome, are just a few. Such services claim to offer accuracy, insight and trustworthiness for just a few hundred dollars in many cases.

There’s no need for a referral from a health professional either. Simply provide your credit card details online, ship some saliva or other tissue to a laboratory and receive your test results and interpretive information by email.

Tests vary and their costs vary, and there is no doubt that popular demand is steadily rising. A 2012 study estimated that up to one million people had used personal genomic testing services already. In 2015 one firm alone, Mapmygenome, estimated that it will have 100 million clients by 2030.

Self-Quantification

The social movement known as the “Quantified Self” – whose slogan is “self knowledge through numbers” – is a good place to start looking at people who share their personal genomic data online. Once it became convenient and affordable to arrange a personal genomic test online, it was only a matter of time before a group of people who were already fascinated with self-quantification saw the potential. Self-quantifiers are now integrating their personal genomic data with their other health and lifestyle data, and pursuing this new avenue for self-knowledge within a worldwide community of interest.

Quantified Self Laboratories is a company founded in 2007 by two Wired magazine editors, Gary Wolf and Kevin Kelly. Starting with one group in California, it now supports more than 100 Meetup groups internationally, as well as social media channels and an annual conference. Its growth has built on the availability of mobile apps and wearable devices for non-clinical use in monitoring aspects of health and well-being (for tracking sleep, weight, steps, blood pressure, mood, and so on).

In Quantified Self discussion forums, self-quantifiers contribute tips and tricks for using these tools and for working with the personal data that they generate. For example, one forum post alerted people to the release of Genomapp, an app designed to analyse your test data and produce reports on inherited conditions, pharmacological responses and so on.

Kelly was talking as early as 2009 about the inevitably public status of all individual human genomes. The Quantified Self YouTube channel in 2011 posted a talk on genomic self-hacking by Melanie Swan, whose non-profit research organisation DIY Genomics is based on crowdsourced health data. An invited speaker at the 2014 Quantified Self conference, the Executive Director of the Personal Genome Project Jason Bobe said: “When we think of the intersection of self-tracking and health, it’s harder to find something more definitive and personal than one’s own genetic code”.

A Web of Social Sharing

Many people who share their personal genomic data in the Quantified Self community are also active in interrelated online social networks for health and for genealogy.

A high-profile health community of this kind is Cure­Together, which aims to harness large amounts of data crowdsourced from tens of thousands of patients to improve diagnostics, research and treatment of many diseases. As well as being a large-scale data-gathering tool, it enables individuals to share personal information and knowledge about different medical conditions; there are millions of reports of people’s experiences with treatments for more than 600 conditions.

Cure­Together was started in 2008 by two biotechnology researchers and entrepreneurs to help them resolve a personal issue with chronic pain. In 2012 it was acquired by 23andMe in order to improve its ability to gather data for research while also providing its customers with better online community interactions.

Among genealogy communities online, Ancestry.com is the largest, with over 70 million user-created family trees. Since it launched its AncestryDNA test to give its users information on their ethnic background and to connect them with distant relatives, it has built up its database of more than one million genotyped people. In 2015 it added the AncestryHealth service to allow its users to compile family health history information with the help of their Ancestry family tree.

The evolution of new tools and apps that support manipulation and exchange of personal genomic data is still in its early stages. In the past few years, researchers have presented designs for GO-WELL, an app for integration of self-tracking and genomic data in a personal health record, and for MyFinder, a tool to enable the use of genetic data for sleep and wellness research through what developers call “intimate community computing”.

The current edition of Genealogy Online for Dummies includes new advice on how to leverage social networks and the growing number of mobile apps to locate family members and trace their histories. As more such tools emerge and are refined, they are bound to encourage even further online social sharing of personal genomic data.

Why Do It?

Some sociologists consider that online sharing of personal genomic data is biosocial behaviour. Social relationships and group identities can form based on beliefs about common genetic ancestry or common genetic susceptibility to disease. It is now possible to build and sustain such connections by sharing personal genomic data on the Internet.

Another explanation for why people engage in this behaviour centres on people’s love of storytelling. “Autobiology” is a new term coined by researchers Anna Harris, Susan Kelly and Sally Wyatt to describe the online social sharing of personal genomic data, particularly in the form of YouTube videos. In these videos we are seeing a new genre of biological wayfarer stories, with dramatic elements such as scientific exploration, historical discovery, taking chances and confronting risks.

From another point of view, we may regard online social sharing of personal genomic data as citizen science. It may be a logical extension of the changes that the internet has brought to healthcare and biomedical research. Lay people now have access to knowledge, information and data that previously were accessible only to professionals and researchers. New technologies now enable people to participate more actively in their healthcare and share more decision-making about it.

The ability to generate and share large volumes of detailed biomedical data in intentional communities empowers average citizens to play a new role in biomedical research. Donating personal genomic data to open data repositories has a “feel good” factor for some people. For instance, the Personal Genome Project encourages this aspect of data sharing for public benefit. Others talk about banding together to take control of their data, and to direct the research in which it is used so that it addresses their personal concerns. DIYGenomics and CureTogether are examples of online data-sharing communities that reflect these values.

Think Again

Do you feel the need to affirm your identity or manage your health by sharing your personal genomic data and other self-quantification data with distant relatives or complete strangers over the internet? If so, you may be succumbing to marketing hype.

It’s clear that some direct-to-consumer personal genomics testing companies encourage their customers to share and compare their genetic make-up and to connect online around traits or medical conditions. Read their Terms of Agreement closely: their reasons are likely to be more commercial than communitarian.

For example, both 23andMe and AncestryDNA have business models that include selling your data to research and development departments of biotechnology and pharmaceutical corporations. Data about you in a company’s database is under new management if and when ownership of a company changes, too.

If you choose to share your personal genomic data and other self-quantification data in a not-for-profit community, you still need to be aware of privacy and security implications. For example, it is legal in most jurisdictions for someone making a decision about your work, civic or financial status to search online social networks for information that you make public there.

Furthermore, if you think you are sharing anonymously and masking your real identity online, think again. Researchers around the world have demonstrated various methods by which it is possible to re-identify supposedly de-identified personal genomic data using computing power that is now widely available. If your personal genomic data falls into the wrong hands, worst-case scenarios include public revelations about aspects of your family tree or your risk of disease, or synthetic DNA corresponding to yours being used for criminal purposes.

Looking Ahead

Despite the downside, many people who have used direct-to-consumer testing services are upbeat. Expressing their views, enthusiast Paul Lampkin said earlier this year:

It’s the ultimate quantified-self set of numbers. Forget how many steps you average in a week, or what your resting heart rate is – DNA genotyping allows us to create the complete spec-sheet for our bodies.

Some self-quantifiers are taking this a step further, following related lines of enquiry into the microorganisms that their bodies host now that a direct-to-consumer testing service, uBiome, offers genetic sequencing of the microbes from your mouth, ears, nose, gut or genitals.

Some of the world’s most innovative thinkers and dedicated scientists are also seeking to scale up personal genomics plus self-quantification to advance the precision of medical care. For example, Larry Smarr, a University of California San Diego professor, has been called “the measured man” for his public self-experimentation with these technologies over the past 5 years. And Google’s Baseline Study, which is being undertaken with the medical schools of Duke and Stanford universities, began recruiting volunteers in mid-2014 to provide genetic and molecular data with the intention of assembling a definitive dataset on a healthy human being.

The translation of this new source of knowledge into healthcare is already occurring. Launched in 2015, Arivale is an online service that offers individual coaching based on personal genomic data and self-quantification data. The website features the stories of pioneer clients who attest to this company’s claim that “being part of a larger community dedicated to health and wellness gives you the integrated scientific edge and the ongoing support to help make the journey work for you”.

One thing is certain. As this form of personal data collection and sharing gains momentum, everyone will be able to watch how the peril and the promise play out in the very public arena of the internet.


Kathleen Gray is an Associate Professor in the Health and Biomedical Informatics Centre at The University of Melbourne.