Little by little, the introduction of new body-worn technologies is transforming the way people interact with their environment and one another, and perhaps even with themselves. Social and environmental psychology studies of human-technology interaction pose as many questions as answers. We are learning as we go: "learning by doing" through interaction and "learning by being."9 Steve Mann calls this practice existential learning: wearers become photoborgs,3 a type of cyborg (cybernetic organism) whose primary intent is image capture from the domains of the natural and artificial.5 This approach elides the distinction between the technology and the human; they coalesce into one.
With each release greater numbers of on-board sensors can collect data about physiological characteristics, record real-time location coordinates, and use embedded cameras to "life-log" events 24x7. Such data, knowingly or unknowingly collected and bandwidth permitting, may be wirelessly sent to a private or public cloud and stored, often for public view and under a creative commons license.2 Embedded sensors on wearers can actively gather information about the world and capture details of a personal natureours and those of others too. These details can be minor, like embarrassing habits of less than admirable personal hygiene, or major, such as records of sexual peccadilloes or events relevant to court proceedings.
The following letter was published in the Letters to the Editor of the January 2014 CACM (http://cacm.acm.org/magazines/2014/1/170857).
-- CACM Administrator
Katina Michael's and MG Michael's "Computer Ethics" column "No Limits to Watching?" (Nov. 2013) was marred by a careless discussion of HeLa, an immortal line of human-derived cells that is today an important tool for biomedical research since being derived from a sample of cervical cancer cells taken from Henrietta Lacks, a patient at Johns Hopkins Hospital in Baltimore, in 1951.
The Michaels said Henrietta Lacks's ". . . cells were 'taken without her knowledge.'" In fact, she had a biopsy, like millions of other cancer patients. They further said, "Until this year . . . HeLa cells were 'bought and sold . . .' without compensation." The understanding agreed in August between the National Institutes of Health and Lacks's family was, in fact, about access to genomic data, not compensation. Lacks's granddaughter Jeri Lacks Whye even said to the NIH: "The Lacks family is honored to be part of an important agreement that we believe will be beneficial to everyone."
The oncologists treating Lacks should indeed have asked her whether they could reuse her cells for research. But monetary payment in such cases could lead toward a market in human body parts. Your body is "yours" in many senses of the word, but not in the sense that you may sell it. This is a consequence of the 13th Amendment to the U.S. Constitution and other anti-slavery laws around the world.
The Michaels further said, "Consider the story of Henrietta Lacks, whom scientists named 'HeLa.'" In my experience, even this is inaccurate. I have heard many scientists say they work with "HeLa cells," as well as with BL321 cells and CHO DG44 cells not of human origin. When I have heard them speak of Henrietta Lacks, they have called her by her full name.
The Michaels rightly said, "There is a stark asymmetry between those who use wearables and those who do not. . . . Maker or hacker communities . . . create personalized devices . . . [which] often [are] commercialized for mass consumption." I suspect they were trying to reinforce this point by saying if "scientists" disrespected Henrietta Lacks, then perhaps engineers devising wearable devices today would likewise be disrespectful of bystanders in the field of view.
Such lazy generalizations about scientists can hardly help readers like me address the ethical challenges we face.
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