Hacking humans: Jane Metcalfe talks neobiology, consumers' role in health data
Humans have hacked all sorts of computer systems, but now we are starting to hack ourselves — specifically, our health and biology.
“We [are at] the dawn of what I call the neobiological revolution, which I define as the accelerating movement of ways to use technology and biology to alter the human race,” Jane Metcalfe, founder of Wired and editor and chief of NEO.LIFE. told MobiHealthNews. “It is also the next stage of the digital revolution.”
Metcalfe will be giving the keynote address at the Health 2.0 Annual Fall Conference in September, where she will be talking about the next digital frontier of neobiology.
“These tools enable us to hack ourselves and find ways of treating disease and amplifying our abilities, and they will ultimately alter our species,” Metcalfe said. “We are having incredibly excited responses to it. Things like CRISPR have the power to really ignite our imagination. But they also trigger a lot of fear. What I’m interested in tracking is the consumer response to biotechnological innovation, and sort of tracking how we are using this for personal health and what the cultural response to it is. That is kind of a big focus area.”
Not all developments in the digital revolution are as dramatic as CRISPR, but advances in gathering and applying data have also created opportunities for discovery. Metcalfe said many have so far been receptive to being part of that revolution.
“The interesting thing about having a disease is people get very altruistic,” Metcalfe said. “They say, ‘I want to give my data to the researchers and I want other people to give their data to the researchers so that we can come up with solutions.’ So there is definitely an altruistic thing that exists.
"What is interesting is the difference in value in my data, and someone who has a rare disease. My DNA is pretty vanilla. There just isn’t a lot in there that is of interest to researchers. But Henrietta Lacks had a very different situation. How do we create a structure that allow us to take into account the difference of value to healthcare? I think these are ethical questions, moral questions, as much as economical ones.”
As data becomes more readily accessible, this also brings to light questions about privacy and compensation. Implemented in May, the EU’s General Data Protection Regulation (GDPR) spelled out specific data and privacy guidances about how citizen’s personal data could be used. Metcalfe said these new regulations across the Atlantic have the potential to get Americans thinking about reasonable privacy expectations.
The influx of data also leads to questions about compensation. Metcalfe said that at the moment very few people or companies are willing to pay cash for data. However, there are several organizations like Nebula Genomics and hu-manity.co that are offering a type of cryptocurrency for that information.
“The value of that currency is based on faith and the shared agreement of value. It will be interesting to see in the future and definitely something to track,” she said.
But beyond control of the data, patients are also starting to become the gatekeepers for their health records as well.
“There is no doubt in my mind that you will be the repository of your medical records and data,” she said. “People move a lot and switch jobs and doctors, and lots of time they encounter something that is beyond the ability of their [general practitioner] or they aren’t happy with the support of their [general practitioner].”
That’s where having a personal record could come in handy. A recent example of this is the Apple EHR feature, which lets consumers keep their health records right on their phone, and enables folks to be more involved in their care or become “citizen scientists.”
The digital revolution has also led to what Metcalfe calls the “collected intelligence,” or patients' ability to share their data and experiences with each other. This has the potential to change the system and empower the patient consumer, she said.
“It is kind of extraordinary what happens when individuals share their data with each other,” Metcalfe said. “There [are] platforms where patients can share their experience, from what did you pay for the drug, to what are the side effects of that drug, to how did you hack that medical device and make it work for you. A lot of that information would be siloed and there would be regulatory impediments to it being shared, and there would be economic reasons for not sharing that information. So having opportunities for patients and individuals to share their experiences is something that could impact the balance of power in this relationship and could lead to contested outcomes.”
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