informed consent

See the following -

Ethics And Risk In Open Development

Linda Raftree | Open Knowledge Foundation | November 5, 2013

Ethics around ‘opt in’ and ‘opt out’ when working with people in communities with fewer resources, lower connectivity, and/or less of an understanding about privacy and data are tricky. Yet project implementers have a responsibility to work to the best of their ability to ensure that participants understand what will happen with their data in general, and what might happen if it is shared openly...

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In Healthcare, It's Placebos [Almost] All the Way Down

Two remarkable articles -- one on placebos, one on informed consent -- caught my attention.  To set them up, a famous, perhaps apocryphal, story: A scientist tried to explain the solar system to a lay audience.  When he finished, a skeptical woman told him he was wrong: the earth was flat, and rested on the back of a giant turtle. The scientist asked her what the turtle rested on.  "Another turtle," she replied confidently.  He then asked what that turtle was on.  The woman would have none of it.  "You can ask all you want, sir, but it's turtles all the way down." Faith is a funny thing.  Especially in health care. Let's start with placebos...

Information Wants To Be Complex

Heather Leson | Ushahidi | June 29, 2013

Questions lead to answers that lead to more questions. Tactical Tech Info Activism Camp has a number of tracks: Documentation, Investigation, Curation, and Beautiful Troublemakers. I joined the “microscopes are us” evidence team aka Documentation. [...] Read More »

Larry Ellison, NSA Database Supplier, Approves Of NSA Surveillance

Philip Bump | The Atlantic Wire | August 13, 2013

Larry Ellison is exceedingly rich and powerful. He is the third-most-wealthy person in the United States and runs Oracle, the database giant. And yet somehow, as he revealed during an interview on CBS Tuesday morning, he is hopelessly uninformed on the ramifications of NSA surveillance. Or, perhaps willfully uninformed. After all, the NSA is an Oracle client, which CBS didn't mention. Read More »

Leader in Clinical Research Tech Reacts to Apple's #ResearchKit

Apple, Inc. has a remarkable ability to capture the world’s attention when announcing “the next big thing.” They have honed their well-known Reality Distortion Field skills for over 30 years...ResearchKit has grabbed such attention. Maybe not as much as The Watch, but amongst the minority of us who pay attention to such things. And the reactions have been typically polarized—it’s either an “ethics quagmire” or “Apple fixing the world.” But reality rarely presents an either-or proposition...

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The Good, the Bad, and the Ugly in Health Care

I hate being a patient. I have to admit that, although I write about health care, I am typically what can be described as a care-avoider. My exposure to the health care system has mostly been through my professional life or through the experiences of friends and family. The last few days, though, I unexpectedly had an up-close-and-personal experience as a hospital inpatient. I want to share some thoughts from that experience. Now, granted, any perceptions I gained are those of one person, in one hospital, in one medium-sized mid-western city. Nonetheless, I offer what I consider the Good, the Bad, and the Ugly of the experience...