Living With CFResearch

A Young Mom is Exploring BlockChain Technology

I me Julia at the Global Genes Conference in California last September. She and I share an interest in BlockChain technology. For me, it is a secure way to share data and get paid. Through our survey, we found that 90% of you (530+participants would like to be paid for your data!)
This blog is from Julia and she gave me permission to share it with all of you.


I am the mother of a 3 year old daughter with a rare disease called Shwachman Diamond Syndrome (SDS). We live in the UK, where 59 patients have been diagnosed. When we received the diagnosis, my natural instinct was to learn as much as I could about the disease and to try to get involved with other parents, doctors, researchers, to see how I could help move research along. I became a Trustee of the newly resurrected UK SDS charity earlier this year, and my main focus has been to set up a registry. My professional career is in venture capital, which gave me a natural insight into the importance of data.I knew that establishing a registry would be paramount as funding is directly correlated with the number of diagnosed patients, and that capturing ongoing data is key to unlocking understanding about the evolution of the disease, which ultimately will lead to the development of therapeutics.
As for Blockchain, I have been learning about this technology from an innovation and investment perspective, and it became very interesting to me when I started thinking about it in the context of personal health data and in particular, that of rare diseases.
I have noticed how hard it is to encourage parents to submit data for registries, which is understandable when they are busy caring for sick children. I am curious about if and how blockchain technology might make it easier for patients to participate. I am also interested in the ownership of that data, as currently it is not readily communicated who owns the data and how it might be commercialised. Blockchain may be a way that patients can participate in the value generated from all the research that is taking place.

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  1. Kate
    December 9, 2017 at 8:04 pm

    Are you using a “green” blockchain system? These technologies are enormous power hogs and are expected to use more than the world’s current power usage by 2020. I like the idea of the technology, but not the environmental consequence, as most power is made by coal-burning plants, contributing to air pollution. As someone with a lung disease, I am wary. See this article:

    • Brooks
      December 18, 2017 at 7:13 am

      Indeed, Bitcoin does use a lot of energy to support its worldwide network, though the counterpoint is, so does Visa, Mastercard, Paypal, and all other third-party payment providers, providing similar services. Andreas Antonopoulos explains the counter-point very well in this Q&A video:

      Additionally, the cryptocurrency community is aware of this situation, and many of the other cryptocurrencies are exploring other means of securing their networks that don’t need as much energy (proof of stake systems rather than proof of work), so there’s the potential for them to use a lot less energy in the future (while it’s very unlikely that Visa/Mastercard’s global energy use would decline in the future). That’s comparing to existing payment processing, which is not the use-case this article is examining, but if other utilities for Bitcoin and other blockchain technologies are found, then that energy cost is supplying more and more utility, making it more efficient over time simply by its usage.

  2. Imogene
    December 10, 2017 at 5:54 pm

    Thanks Kate! I am a newbie exploring Blockchain. This is a much needed discussion. I am impressed with the power and the security Blockchain affords. I wonder what a “green” Blockchain system is? I am only observing this as a way patients can share their medical records, genotype and phenotype data and bring it safely to market. There are solarcoins and then this energy use was predicted in Moore’s law. Yes, we have to figure out how this can be done safely and efficiently. Great points!