Ian Kerr, Canada Research Chair in Ethics, Law & Technology at the University of Ottawa
The Repo Men Reductio Body EULAs, Privacy and Security of the Person
Recent medical advances allow us to transcend biological limitations through the implantation of microchips, digital body parts and artificial organs. However, surprisingly little thought has been given to the ethical and legal aspects of their design and use. In this keynote address, Ian Kerr, Canada Research Chair in Ethics, Law and Technology, examines current ethical and regulatory approaches that govern medical devices and argues that the existing paradigm of mass-market consumer goods is not particularly well suited for the health sector. His primary concern is that individuals are increasingly called upon to sign complex contractual documents that diminish privacy and autonomy not only as users of mass market consumer goods but, now, as medical patients. Drawing on lessons learned in the field of privacy and information technology law, he suggests that special considerations are required in the healthcare context to ensure that patient autonomy and privacy are adequately protected in an era where our bodies are becoming inextricably tethered by devices and software owned by health care providers in partnership with industry
Ian Kerr's premise is that the digital drives the mechanical. This covers the human-machine merger. We are implanting more equipment into our bodies, and giving machines more personification.
Digital body parts, and prosthetics; questions implicate the security of the person, beyond simply privacy concerns. Reductio ad absurdum almost seems an easy way out of the debate, except that things have already moved well beyond science fiction.
"Building Better Humans" is the course he teaches across North America in prestigious universities. The topic revolves around enhancement based medicine, intended to make us "better than well." The trans-humanist movement includes deliberative selection, not natural selection, including the use of artificial organs. Current examples are ventricular assist valves that can replace the need for a heart transplant, insulin pumps which replace the need for a pancreatic system, and cochlear implants for hearing.
A cochlear implant is an interventionist technology, as the change required to the auditory nerve is a one way road; the nerve is severed and this is a permanent change.
The book "My Bionic Quest for Bolero" summarises how the cochlear implant improved hearing beyond normal human capabilities to distinguish more discrete differences in frequencies.
What is the social model that goes along with this change in our technologies impacting our society?
There are politics infused in the architecture of these technologies.
This represents the cultural genocide of the deaf community. This implies that this group is broken and needs to be fixed. Political decisions are built right into the design of these technologies.
Reference to Alexander Graham Bell, his wife and mother both being deaf, and his political view of deaf culture was to assimilate deaf people into the society of those who could hear via hearing assist devices.
Discussion now shifts to the techno legal model. Prof Kevin Warnick has engaged in a number of experiments with a neural transducer. Placed in his arm, this "router" intercepts the signal and routes the signals to the Internet and to a robotic arm that performs the desired actions.
We live in a world of ad hoc sensor networks and wi fi. Devices we carry interact with each other, without our knowledge or permission. What are the implications?
Implantable devices and personal area networks have privacy implications, as the nature of the information we exchange intentionally or unknowingly changes. Our physiological information is also moving over the PANs and subject to the WANs.
IPV6 would allow us to provide 7 unique identifiers to every atom in every human body.
Process for getting a cochlear implant includes a consent to a contract with the vendor for warranty; effectively a terms of services agreement for the technology implanted in your body.
The business model for medical devices, is the exact same model for mass market consumer products. These devices are being regulated the same way your iPod is regulated.
There is a proprietary nature to these devices, but are the EULAs appropriate given the actual use? For software and hardware, these are take it or leave it bargains, where the consumer's choice is summarised by mandatory volunteerism. Fictional consent mechanisms imply a consent, contract where both parties have negotiating abilities, this should be offensive to each of us.
EULAs by default are not privacy friendly.
We should have freedom of contract, even more so, as the technologies enter our bodies, we need freedom from the contracts.
"End user licenses are becoming the rule, and those who draft them are becoming the rule makers." - Ian Kerr
Showed us the terms and conditions agreement you must sign to agree to get a bionic ear, which includes voiding a support if there is unauthorised maintenance or work on the device, putting you at the mercy of the manufacturer for a part of your body irrevocably implanted.
We need to be aware of our digital rights.
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