When I studied the use of RFID in healthcare I was amazed at the possibilities for this technology and it's essential humanness. An RFID barcode is much safer for an infirm patient because the identification or drug dosage on the RFID signal can be picked up without having to move the patient. A barcode, on the other hand, might be on a wrist under a sleeping patient, so they would have to be turned over in order to scan the bar code in line of sight. RFID technology was also great for keeping track of physical assets like infusion pumps, and
inventory replenishment systems. On the other hand, keeping track of people presented some ethical and privacy concerns because people would be under the impression that they would be constantly under surveillance. When the word "surveillance" is used, Big Brother rears its ugly head.
Surveillance needn't be a fearful word even though it has a strong presence in security organizations and anti-terrorism. There are forms of surveillance in public health that can be beneficial for the health and welfare of society, such as
syndromic surveillance, even though that too may have had some origins in state security, i.e. finding out where that anthrax threat was.
One thing I like about the
wearable computer work of Steve Mann is his bold claim that the eye-tap or video glasses he created and wears present to society a form of what he calls "sousveillance", which is a much more nuanced, benign or human form of it's evil cousin - mentioned above. Sousveillance is an understated way of trying to balance the power of who is watching who. For some totally unknown reason it reminds me of the
anti-sus dub poetry of Linton Kwesi Johnson. The
anti-sus laws, or suspected person vagrancy laws in 19th century Britain might have nothing to do with sousveillance, but I am sure Steve Mann has had that feeling of being considered a suspicious and unwelcome person. Racial profiling for cyborgs? His
McVeillance experience is indicative of that.
Now try to imagine a year in the future when everyone is wearing eye-tap video devices of that type Steve Mann and then Google developed. Maybe this is in 2020,( appropriate for seeing perfectly), and maybe it is not, but won't this mean that everyone we see on the street, and their dog, will be the equivalent of a Google Street View with a 24/7 refresh rate? And then ask yourself what does this do for for privacy laws, and you will have to wonder why the
privacy commissioner of Canada wrote a letter to the lawyers at Google in 2007 to say that Google Street View would break all of Canada's privacy laws if it was implemented! It is interesting to try and imagine this future and one science fiction book I read by Charles Stross, called
Halting State did exactly that. It was a murder mystery inside a video game but the real life police all had video recording visors they were obligated and/or controlled to wear on the job, recording all the visual details of their day to day investigations. Surveillance technology may not have been extended to all citizenry, but now the details are slipping away on me - read it a few years ago.
Notions of privacy will be changing beyond a doubt. Even now in different cultures there are different notions of privacy and proxemics. I think it was Iceland that lists your tax return information in the phone book or something like that. Imagine if we all started using Augmented Reality eye-tap devices, like the ones on the
veillance.org website which are tied into redundantly backed-up servers. Imagine people walking through hospitals with such wearable devices scanning people sitting in the STD clinic waiting rooms. Personal space is being violated in terms of personal health information (PHI). The technology is wonderful though. As Personal Health Records are being developed (even with HL7 standards) a problem area is how to capture and store personal information submitted by the patient, not the physician, and how to make that information intelligible. Streams of data from daily blood tests, BP, and now possibly wearable computer video images, needs to managed and made relevant somehow. On the other hand, IT and policy specialists in healthcare have mostly normalized the Bring Your Own Device (BYOD) phenomenon.
Another notion of privacy that might need to change is the idea that PHI is always private. Some people are already posting their PHI on facebook and they don't care if it is public. In rare cases we have even heard that this has saved lives. I have personally heard research participants with rare and chronic health conditions who are posting their personal health records as widely on the internet as possible in order to obtain possible help or insight for future research. It is technologically possible I suppose to put PHI and other forms of identification into Augmented Reality "fields of vision" for other persons with wearable devices to readily pick up. The only thing stopping people from doing that is the notions of privacy and their willingness to consent to have that out there in the public domain.
I like Steve's distinction (on
wikipedia - or
brilliant IEEE article ) between surveillance and sousveillance:
Personal sousveillance is the art, science, and technology of personal experience capture, processing, storage, retrieval, and transmission, such as lifelong audiovisual recording by way of
cybernetic prosthetics, such as seeing-aids, visual memory aids, and the like. Even today's personal sousveillance technologies like
camera phones and
weblogs tend to build a
sense of community, in contrast to surveillance that some have said is corrosive to
community.
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The legal, ethical, and policy issues surrounding personal sousveillance are largely yet to be explored, but there are close parallels to the social and legal norms surrounding
recording of telephone conversations. When one or more parties to the conversation record it, we call that sousveillance, whereas when the conversation is recorded by a person who is not a party to the conversation (such as a prison guard violating a client-lawyer relationship), we call the recording "surveillance".
It is within this realm of "personal sousveillance" that the work of Steve Mann as applied to health informatics, is really to going to shine. Steve was one of the original
group who helped secure funding for
the Centre for Global eHealth Innovation at the University of Toronto, which is a world leading health informatics incubator. Steve has also done some research using
sousveillance on hand hygiene to reduce hospital infections. There are other more bold applications, of course, like using
google glass in surgeries or dentistries for training and/or assisted learning.
In my own small way I am also trying to think through the "legal, ethical and policy issues", as Steve says, here on this blog. Those at the
Institute for Ethics of Emerging Technology are also doing that "in spades", and there is a recent article about Steve Mann and sousveillance on it (
here). Steve has recently argued for "legal" rights for sousveillance in an editorial for
MIT technology review. Veilliance has become a study in itself, in all it's various forms, as Steve leads a Veillance conference and research group, which it would appear I made a blog post about last year<
here >.
I could also blend in here a discussion related to the
ethics of self-experimentation (and hat tip again to the folks on the
CAREB Linkedin group for that article). Mostly we have known about clinical self-experimentation, and in social sciences/humanities there are '"autoethnographies", but now with the development of new technologies people are trying their own DYI experiments. I saw an TVO Agenda program (
Mysteries of the Mind - Tomorrow's Brain ) that discussed the health benefits for improving cognitive function and mental health using Transcranial Magnetic Stimulation (TMS) where the panel experts played a youtube video they had discovered and discussed the guy in it who hooked his brain up to his own home-made TMS device. In the video we see the guy, when he turns on the electricity, explaining: "Just saw a white flash". So don't do this at home kids!
Steve Mann is not a guinea pig. He isn't a research subject. He is the subject of his own research. Developing and wearing computers is something he has done since he was a kid, so he is just using evolutionary momentum for whatever agile developments that improve his cybernetic state of well being. An oversight committee at his place of employment might recommend a technology ethics review, but we have to think that Steve is largely "self-employed" with this system, "dug in like a tick", and there ain't no separating him from this life experiment with digitally enhanced awareness. Anyway, Steve would fight back against anything "oversight". The dangers of any research involving humans is that researchers to a certain extent "have blinders on" and are biased towards their own methodologies and perceptions of risk, and thus lose objectivity.
I don't know who said "the pull of the future is greater than the push from the past", but I do remember the person who I heard it from. Whoever it was must have imagined some strange and distant world waiting to be born. That is the sousveillance world of Steve Mann.
