Is genome sequencing a social responsibility?

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Is genome sequencing a social responsibility?

A friend of mine with whom I discussed the topic of individual, systemic health and well-being from cradle to grave, sent me a link to https://nebula.org, a Boston start- up recently financed with the help of Heartbeatlabs, Germany. It is just one more start-up which with the help of blockchain, one of the actual buzzword, tries to motivate you and me to share our health data with the promises of ownership, reimbursement, exclusion of the middlemen and safety; in this case focussed on sequencing our genomes.

But for which purpose? What would be my benefit from it besides becoming reimbursed for data sharing. What could be the benefit for the community I am living in? In the above case promises are made which can realistically not been kept due to the established and lately even reinforced reductionist approach in life sciences.

What do we know at the moment really for sure based on the limited and not easily comparable datasets generated since the human genome project?  What do we really understand about individual disease pathways due to internal and external systems and context differences, the behaviour of complex adaptive systems is until now neglected. What can we know due to the event based medical dis-ease management we follow – not health care – with its biases and missing integrations of specialists insights?

Nobody seem to care about the feelings and risk induced in otherwise healthy people, if a genetic risk is identified, but the certainty  and context under which it will finally take place cannot be specified with trust these days? How will this information change her/his life? Impair it? What help will be offered. The hint to potential re-engineering solutions is even more futuristic despite the fact that some will try it based on reductionist views.

Yes, I agree that it is time to improve our data sets, sharing of personal health data can dramatically improve  health and well-being management. Too many of the publicly exchanged arguments used to set research focus and generate public funding, to create health markets are based on data, which are generated for re- imbursement purposes with a huge biases. They are used to further medicalize the population without being aware that this will shrink profitability even more, accelerate competition and impair trust in the industry and provider, increasing cost further. Finally we all will loose.

How to define health (and even dis-ease) in time of true individuality in each moment of life? It is time and it is possible to change it, to co-create solutions which really benefit the industry, the economy and the individual who wants to stay healthy or to recover effectively.

To achieve it, fundamental changes are needed. These range from the models applied to understand individual, systemic health and wellbeing – not dis-ease only as of today – to data autonomy, data sharing, new roles and responsibilities for health and the way the ROI of these data is payed back to individuals and society. The citizen is the only who really cares upon and can manage her/his health, but his egoistic interest is in the same moment the crucial cornerstone for our health if we co-create the new frameworks and models for MiHEALTH4All.

Are you ready to innovate? The question to answer for enabling true precision medicine is:”How can we facilitate individual, systemic health and well-being from cradle to grave with our solutions?”

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