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Wednesday, June 19, 2019

The Ethics of 'Biohacking' and Digital Health Data

Sy Mukherjee
Fortune.com
Originally posted June 6, 2019

Here is an excerpt:

Should personal health data ownership be a human right? Do digital health program participants deserve a cut of the profits from the information they provide to genomics companies? How do we get consumers to actually care about the privacy and ethics implications of this new digital health age? Can technology help (and, more importantly, should it have a responsibility to) bridge the persistent gap in representation for women in clinical trials? And how do you design a fair system of data distribution in an age of a la carte genomic editing, leveraged by large corporations, and seemingly ubiquitous data mining from consumers?

Ok, so we didn’t exactly come to definitive conclusions about all that in our limited time. But I look forward to sharing some of our panelists’ insights in the coming days. And I’ll note that, while some of the conversation may have sounded like dystopic cynicism, there was a general consensus that collective regulatory changes, new business models, and a culture of concern for data privacy could help realize the potential of digital health while mitigating its potential problems.

The information and interview are here.

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