The Ethics of ‘Biohacking’ and Digital Health Data: Brainstorm Health

Earlier today, I had the pleasure of moderating a conversation between a triumverate of unique, opinionated, and generally interesting health care entrepreneurs at a Biohacking Summit hosted by Ogilvy and the Brooklyn-based incubator New Lab.

The topic at hand? The ethics of “biohacking” and digital health data collection. So, you know, the lightweight stuff.

Luckily, panelists Richie Etwaru, CEO of Hu-manity.co, women’s health-focused digital health startup founder Alisa Vitti, and Johnson & Johnson executive (and self-professed futurist) Emmanuel Fombu brought the heat.

Our 45 minute conversation was entirely too short. But here’s just a sliver of the featured material…

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.

Back with more. Read on for the day’s news.

DIGITAL HEALTH

Liquid biopsy startup Grail scoops up Juno's Hans Bishop. More shakeups in the cancer biopharma world: Hans Bishop, the former chief executive of cancer immunotherapy-focused firm Juno Therapeutics (which was eventually snapped up by biotech giant Celgene in early 2018, after which Bristol-Myers Squibb proposed an acquisition of Celgene) has now been hired to lead hotshot "liquid biopsy" startup Grail. Grail is developing technologies to suss out cancers in the early stages via a simple blood test rather a biopsy, and just last week presented striking (if very preliminary) data on its platform's capabilities.

THE BIG PICTURE

WHO: 25% of Congo Ebola cases weren't detected. The World Health Organization (WHO) announced Thursday that a staggering one in four of Ebola virus cases in the Congo were either undetected or found too late, Reuters reports. But the agency also sounded some cautious optimism, noting "early signs" of an ease in the long-running scourge. (Reuters)

REQUIRED READING

Should Alexa Provide Evidence in Court? German Security Chiefs Say Yes, by David Meyer

Huawei Strikes a 5G Deal in Russia, by Alyssa Newcomb

How Cord Cutting Is Driving Big Changes Across the Media Landscape, by Aaron Pressman