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Family request: genetics and social media

Claire Ainsworth
The affordability and accessibility of genetic testing is defining new kinds of social networks. Where could sharing our genetic information lead us?

‘D’ would like to make contact with me. He might be my fifth cousin and wants to explore our relationship. I’ve never met him, but by looking at two short pieces of genetic information he includes in his message, I can tell you the sorts of things your mother would want to know about D if you were going out with him (and then some).

Who are his mother’s people? Well, D can trace his maternal ancestry to some of the earliest humans to colonise Europe. On his father’s side, one of D’s distant male ancestors may have hailed from Doggerland, an area of northern Europe swamped, Atlantis-style, by rising sea levels some 8,500 years ago.

If I simply click on ‘yes’, I can share information about my genes with 
him via the website of 23andMe, a California-based personal genomics company that has studied my DNA. 
D has also had his DNA analysed, and has asked the website’s Relative Finder facility to look for other 23andMe customers who look as though they share recent common ancestors.

If I agree, he and I could compare notes about what our gene analyses say about our physical characteristics, ancestry or potential health risks. We could trace our roots and see whether we are in fact distant cousins. It’s all potentially fascinating, but I hesitate.

New family request

Others aren’t so shy. In fact, sharing genetic information via online social networks is a trend that is changing how consumers access and interpret information about their genes, health and ancestry, and possibly how they construct ideas about identity and notions of family.

In days gone by, one would construct a picture of one’s ancestry by listening to the oral history passed on by wise old aunts or by leafing through family albums and genealogical records to fill in the gaps in family trees. We could debate future health problems by studying the conditions that afflicted our parents and grandparents: cancer, Parkinson’s disease, dementia.

But now there’s a far more telling record locked inside almost every cell in your body: the three billion DNA building blocks that make up your genome. These instructions have been passed down countless generations and now, for less than US$100 (£65), you can take a peek at what they say.

The more you know…

The past few years have witnessed a boom in the number of companies offering to study your genome: just send off a sample of saliva and they do the rest. This doesn’t involve reading the entire sequence of DNA building blocks (at least, not yet). Instead, they look at places in the genome where the sequence is known to differ between individuals.

A person’s collection of DNA differences can be used to infer information about their ancestry in 
a number of ways. Studying a small piece of DNA that is passed on only 
by mothers to their children can yield insights about maternal ancestors, 
for example. Men can have their Y-chromosomes, which are passed on by fathers to sons, analysed to study distant paternal ancestors. The third, more comprehensive, method looks at the collection of differences in the remaining part of your genome.

But these scans don’t just give insights into ancestry: some results contain information about potential health risk factors, most of which are largely benign, some of which can be very serious (such as a mutation in the BRCA1 gene that greatly increases the chance of developing breast cancer).

…the more you share

This is one reason why the scans caused consternation among clinicians and bioethicists when they were first offered directly. Tests had previously been limited to clinical investigations for specific conditions and were only available via doctors. Patients received counselling about the tests to help them decide whether to take them, 
and how to interpret the results.

Critics of this approach argued that it was paternalistic, that consumers had the right to freely access their genetic information and that they could benefit from doing so. 23andMe (and other companies) enabled this access alongside online information 
to help consumers interpret their data. These same consumers are no longer simply reading into their scan results, however: they are now sharing them across social networks hosted by the genetic testing companies, Facebook, or via forums and community blogs.

An intriguing aspect of this sharing is that when looking for help in interpreting their genetic data, and particularly ancestry information, it seems that consumers would rather share their findings and seek advice online than talk to their doctors, says Sandra Soo-Jin Lee, an anthropologist and bioethicist at the Center for Biomedical Ethics and Program in Science, Technology and Society at Stanford University in California. Since 2010, Lee and her colleagues have been studying how 23andMe customers are using the internet and social networks to share and interpret their genetic information.

It’s all relative

Lee’s team has found that consumers are forming online communities based on personal genetic information and this is particularly common among those who are already interested in genealogy.

A big force driving this networking is the desire to find others with similar results or to find distant relatives – a sort of ‘genetic kin’, says Lee. Although people tend to feel a stronger connection with relatives found via oral history, this emerging notion of genetic kin is a new slant on the conventional idea of relatedness.

“I’ve had participants talk about finding long lost genetic kin on other continents. They’ve had conversations and will connect with each other.”

Citizen Science

Another focus for networking is genetic information relating to health and disease. But as well as allowing people to discuss their illnesses, such networks allow consumers to take a proactive role in helping to tackle that disease. Geneticists are starting to use such networks to recruit patients for research. Patients themselves are now able, via genomics companies, to have a voice in what research they think should be done.

For example, 23andMe has recruited 10,000 people, whose genomes it has scanned, to take part in its research into the genetics of Parkinson’s disease. It conducts surveys, asking participants about physical traits or illnesses so the company can isolate areas of the genome (and the genes they contain) associated with these characteristics.

“The research is core to our mission and has been since the beginning,” says 23andMe’s Senior Director of Research, Joanna Mountain.

Although not currently on the cards, a technology that allows customers to pose research questions directly to 23andMe’s online community is something the company would like 
to develop. Any analysis associating traits with genomic regions would then be performed automatically. “That’s more of a dream, but it goes along with this trend towards ‘citizen science’,” says Mountain.

Would your mum want everyone to know that?

Of course, it pays to be careful about what genetic information you share online, and with whom, because in addition to your information it also sheds light on immediate family members who share large portions of your genome. My hesitation about sharing with D, for example, stems from the fact that I haven’t yet received properly informed consent from my parents to do so. If I do, I’m likely to be more forthcoming.

Social media is often accused of fragmenting society, but it’s worth remembering that all human beings share a common ancestor, and 99.9% of our DNA sequence is identical. So perhaps if we share a little more of our ancestry information it will help us to reconnect to the biological roots we share with the rest of humanity – our seven-billion-strong global family.

23andme.com. Previously features editor at New Scientist, Claire Ainsworth is an award-winning journalist and science writer with a doctorate in developmental genetics from Oxford University. Image: www.lisakokin.com; photography: John Wilson White

An intriguing aspect of this sharing is that when looking for help in interpreting their genetic data, and particularly ancestry information, it seems that consumers would rather share their findings and seek advice online than talk to their doctors

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