The Human Genome Race – Part 2 – Privacy

In his last year of presidency, Barack Obama spoke about genetic privacy in the following way: “I would like to think that if somebody does a test on me or my genes, that that’s mine…if I am sick and voluntarily I want to join with other people who have a similar disease to mine and donate our data to help accelerate cures”. Much has changed since then, not all of it bad, and a new human genome race that may dominate the future of medicine as we know it, is on the horizon – privacy.


You will soon be able to get your whole genome sequenced for as little as $100, you already can get your exome sequences at that price-point. The actual hardware is also getting cheaper. A handheld sequencing device has already been produced by the trailblazers at Nanopore. Governments are getting in on the act too. In the UK, the Health Secretary has recommended that all children have their DNA sequenced at birth. This information combined has led market analysts to predict huge growth in the space, taking it to 2 billion consumers and $25 billion dollars.


You may have heard about the promises around personalised genetic data for scientific research, but you may not have heard about the interest from big business. Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. Fear of discrimination is a common concern among people considering genetic testing. On May 21, President  Bush signed the Genetic Information Nondiscrimination Act (GINA) of 2008 into law. Senator Ted Kennedy hailed GINA as the “first civil rights bill of the new century.” The new law prevents discrimination from health insurers and employers. However, the Council for Responsible Genetics found that there are 500 cases of individuals who have been barred from employment or lost their health and life insurance based on an apparent or perceived genetic abnormality.


This hasn’t deterred big business. The leader in the personalised genetic sequencing race, 23andme, has already sold their customers data to Genentech. Google will show geneticists how to upload DNA data to the cloud. Government is not immune to this either. The NHS has a history of selling information to third parties, including drug and insurance firms. However, it cannot be denied the efficiency and value in the products that these commercial products are creating. It could be argued that restricting access to this pool of information will restrict the speed at which medicine advances in this space.


So begins part 2 of The Human Genome Race – Privacy


For those unfamiliar with part one, at the turn of the millenium a publicly funded consortium took on the private company Celera in a race to be the first to sequence the human genome. The race caught the attention of researchers, world leaders and the general public. While some  would say that Celera won the race, both parties had their results published in leading scientific journals at the same time. Then there are those who argue that Celera was better at issuing press releases than the government-funded consortium.


So, who are the new players in this race? They can be easily separated into 2 categories; blockchain based start-ups and the establishment, as well as those who seem to straddle the fence between the two. 23andme, as previously mentioned have history in the privacy space. The fine print at 23andMe says the firm shares de-identified, aggregated DNA information by default with third-party firms to improve their service. More than 80 percent of customers also consent to share more widely, allowing the firm to share with or sell data to pharmaceutical companies. Whether they actually know that they’re agreeing to this is another question.


Nebula Genomics, co-founded by genetics legend George Church “de-identified” data with public databases aimed to help science. Church is also the founder of Veritas Genetics and a Director of the Personal Genome Project. Veritas shares “de-identified” data with public databases aimed to help science. So security is high on everyone’s agenda. What has blockchain got to do with it? Blockchain essentially means an unhackable ledger. With this trustless mechanism technology applied to genomics databases, people can choose who can access their data. Even better they can sell controlled access. As the table below shows, there are a few early contenders in this space, with 2 groups focussed on complete end to end privacy, Nebula Genomics and


As the hype of blockchain oozes into every industry, its becoming more and more apparent that genomics could be the first real killer app in the space. As suggested above, privacy is already required at every step for genome sequencing, but the same logic can be applied to every personalised medicine process, from blood tests to microbiome mapping.


The second interesting angle that blockchain brings is the the ability for the data owners to profit by sharing their genomic data, with contributors receiving a virtual currency and partial ownership of the database.


Combining the drop in technology costs, the promise and demand of personalised medicine and the incentives for privacy, the market is set to boom. The race is on to see which of these blockchain companies can execute on their plans in the most engaging and efficient ways. Who is your money on?


If you’d like to get all of the updates from the team, you can join our Telegram Group here follow us @genomesio

Comments ( 1 )
  • Laurens Wiel says:

    I understand the use-case for I think the block chain technology may be a perfect candidate to ensure uniqueness of the data while empowering the privacy of the User.

    I do have the following concerns on why are there need for tokens? Let me elaborate:
    The user is credited tokens from a third party for allowing them to make use of their genetic data. This means that the tokens are a form of intrinsic value that a user receives. The only way I now see how that user can liquidate that value is by selling them back to the 3rd parties. Which I think does not justify the need for a specific token as this could also be done by any other cryptocurrency or even fiat for that matter.

    So why is there a token in the first place and what are the use cases for the user to liquidate the tokens, besides selling them back to the 3rd parties? Also, who decides on the token-price of a single genome?

    I see great potential for allowing users to donate tokens to specific 3rd parties. E.g. if you are the parents of a child with a severe genetic disorder. And if they then have their child sequenced and thus receiving tokens, I could see those parents willing to donate these tokens to research parties that attempt to find causes/treatments to this disorder. This gives the parents/child much greater control on their genomic data.

    What is also not clear for me is the privacy aspect of the tokens, are these readable on an open ledger? If so, how would guarantee privacy for wallet addresses? Example: if an user has a rare genetic variant that is of interest to multiple 3rd party studies, how easy is it to trace back the transactions to a specific wallet address?

    Looking forward to hear on future developments!

Leave A Comment

Your email address will not be published. Required fields are marked *

%d bloggers like this: