Discrimination based on genetic makeup has been made illegal by most government bodies in some cases. For instance, the Genetic Information Non-discrimination Act ensures protection from both employment and insurance for citizens in the US. This was pre-emptively made as safe line to show the governments intent surrounding the law. Genetics influence and the innate requirements it imposes, could develop the world to much greater extremes than those two tenets alone. Imagine a world on the road to GATTACA, where schools accept scholarships on genetic athletic or learnability potential, or every people form social media groups based on specific genetic traits. What if it becomes more clinically malicious, where people are labelled potential criminals because they have a violent genetic composition? Are you your genetic makeup, or is their more to the sense and accountability of self?
In all these situation trust, consent and permission are key, with easy access to genetic information being subject to the owner of the genetic material. When you here trust and data, Blockchain pops into mine. That is what the team at Shivom envisaged when they constructed their whitepaper. Critically, for the first time people scan and store the genome or relevant parts of the genetic makeup without having to worry about trusting those facilitating their services. The chance that the organisation sells their precious collective database, or it leaked with profile confirmation is minimal due to end-to-end encryption and the nature of blockchain technology.
Moreover, Shivom has financed their private blockchain network with another public network, where user can choose when to sell their data deidentified to researchers. Their dual networks have a natural symbiosis, with the ICO of the public financing the creation of both. This is an inventive financial operation, which acts as a possibility frontier for many other non-market based technology projects. Now the ethical considerations of stolen genetic data, corporation claim data ‘ownership’ of their client’s composition, genetic black-market resellers, non-consensual cloning, genetic glitch rewrites and just a plain lack of consent in every decision made, are gone. People confirm the distribution with their keys and the information signatures ensure correct access is maintained in the decentralised network. Nobody needs to confirm or deny anything, access is only physically possible and available where it is necessary.
This fundamental switch in the way we organise a social interaction system, from a trust building exercise with corporate heavyweights to a global, decentralised consensus, does remove some of the existing dilemmas but adds some more as well. For every side new problems arise. Although the ethics are quite futuristic in their considerations, philosophical discussion over their implication of these issues is important with the advancing pace of technological advancement.
People value their genetic data differently. Depending of the how much they value their data, and various economic demand sized factors, the price for different data points will be different. Is one person’s genetic data more ‘valuable’ than another and are we implicitly creating classes based on your genetic value? Further, will incentives created for genetic data make people over-distribute their data. Are you then infringing on the liberty of your ancestors or your descendants by over-distributing that data in a public network? Do people really understand the value and importance of the genetic makeup? Perhaps providers in the future will desire to provide the information to get a job or get cheaper insurance, or anything else in the same vain. Is it okay if it was consensual by some, or even by all?
Now, consider a situation where a poorly fund research institute is looking to obtain genetic data. When people with differing genetic competitions offer their data and an algorithm or person is told to obtain overtime the cheapest data possible, the individual micro-contribution can contribute to a significant bias. Imagine if all samples contain genetic data from a type of human or all experiments only record data from the same cheap sources. NIH, under the NIH Genomic Data Sharing (GDS) policy, expects that researchers generating large-scale human genomic data use specimens or cell lines for future research purposes and broad sharing. Similarly, if collectors obtain the data in unison and then share that data with one another, does the entire market breakdown and the whole point of Blockchain defunct.
When is it okay for the foundation to step in and get involved. If a trading crisis occurs or the government prohibits an action do they have the right to enforce an action and does Shivom have the right to prohibit their service to a nefarious source? Shivom’s decision to have both the private and public networks has them pro-rata act as a middle-man between either network. In the spirit of decentralisation, this middleman has us required to trust Shivom once more. If this is the case, some of the original ethical dilemmas may be minimised but not eradicated. If widespread adoption takes place, those attached problems may grow to be bigger than their origins.
Despite the potential ethical dilemmas, financial technology’s new intersection with health, genetics and blockchain is inspiring and exciting. The possibilities of more accurate preventative medicines and the potential value creation from free trade far outweigh any ethical fears we might have. From a utilitarian perspective, it seems like Blockchain is minimising the worries we must have in this case. Society needs to move forward with the pace of innovation. Shivom has exhibited a new level of excellence in their planning and exhibition of their ideas for a future market. For once, we should be glad that Blockchain technology is being used for it true potential.