For all of those in a perpetual snit about personal data privacy, here’s bold proposal: donate your own medical data. And do it now — don’t wait till you’re dead.
Michael Driscoll, CTO of Metamarkets, (see disclosure) made this pitch in his blog earlier this week. Lots of people designate their organs for donation after their demise, but in his blog, Driscoll argues:
…why shouldn’t you be able to give your DNA sequence, your diet, and your disease diagnoses to science while you’re alive? Unlike your organs, you can donate your data away and yet still keep it.
Talk about the ultimate good use of big data. And HIPAA concerns aside, he thinks many people would go for it, provided it was easy for them to do so and the recipient organization was trustworthy. Devices like Jawbone Up and Fitbit (see disclosure), other body-born sensors, or even cell phones could send the data to construct what “could be the beginning of a valuable data bank,” Driscoll wrote. He attributed the idea to Gil Elbaz, founder and CEO of Factual.com.
Driscoll said sites such as Patientslikeme, which serves more than 122,000 users who share their own health information and Ginger.io technology which enables cell phone sensors to collect and send people’s health data, show what can be done.
There will be the inevitable knee-jerk reaction, but what better use of big data is there than to help existing and future patients with similar conditions? Of course, privacy advocates have a point: Misuse of personal data is dangerous and misuse of personal health data could be worse. Private health data, if it ends up with a potential employer, for example, might cost someone a job. It’s not right, and may not be legal, but it could happen. For that reason, this data would have to be anonymized. For real.
And, unlike past bad practices — the medical industry’s use of Henrietta Lack’s “HeLA” cells without her knowledge is an egregious example — this model must mandate informed consent. (HeLa cells were taken from Lack, a cancer patient in the early 50s and are still in use today. They were termed “immortal cells” by researchers. But neither Lack, who died soon after the cells were harvested, or her children, were ever told that they were taken or that they were used in research.)
The key to medical data donation in the age of big data is full, informed and voluntary consent by people like you and me and ethical, trustworthy and technically-sound decisions about how to store, anonymize, analyze and manipulate data on the back end.
Disclosure: Metamarkets and Fitbit are both backed by True Ventures, a venture capital firm that is an investor in the parent company of this blog, Giga Omni Media. Om Malik, founder of Giga Omni Media, is also a venture partner at True.