A while back Lindsay over at Random Murmurings pointed me towards the podcast of the ABC’s “All in the Mind” radio programme, and in particular this episode, All in the Mind – The Brain Computer Interface (2 December 2006). The episode looks at how technological developments, particularly in digital implants, might aid those with motor neurone disease and similar conditions.
The episode is especially interesting because includes excerpts from the paper co-authored by Nicholas Chisholm about his experience of locked-in syndrome and his observations on medical decision making and ethics from a position of complete lack of voice and power. It makes for very scary reading. The full text of the paper, co-authored with Grant Gillett of the Otago Bioethics Centre in Dunedin, is available at: The patient’s journey: Living with locked-in syndrome — Chisholm and Gillett 331 (7508): 94 — BMJ.
The issues presented connect closely those also raised by Gerard Goggin and Christopher Newell in several of their publications where they argue that those who are being “helped” by technology are left out of the consultative loop, and become merely tools used by those promoting the technology. They also note that ethical guidelines are also often determined by those with little or no personal experience of the issues being faced, and again those with that experience are not consulted. See:
- Goggin, G. and C. Newell (2002). Digital disability: the social construction of disability in new media. Lanham, MD, Rowman & Littlefield. (Link)
- Goggin, G. and C. Newell (2004). “Uniting the nation? Disability, stem cells, and the Australian media.” Disability & Society 19(1): 47-60. (Link)
- Newell, C. (2006). “Disability, Bioethics, and Rejected Knowledge.” Journal of Medicine and Philosophy 31(3): 269-283. (Link)
- News in Science – More support for sex selection – 16/10/2001
- Thanks, but I’d rather be disabled by Marilyn Head | New Zealand Listener (January 21-27 2006 Vol 202 No 3428).
Michael Spezio (neuroscientist and Presbyterian minister) is another voice who is concerned that the optimism articulated by transhumanists and techno-progressives about solving issues of disease technologically with brain-machine interfaces (BMIs) fails to take into account those who are being “helped”. (Spezio, M. L. (2005). “Brain and Machine: Minding the Transhuman Future.” Dialog 44(4): 375-380. (Link))
In the BMI world, conversations proceed, press releases go out, stock losses are assessed, all without noticing the very real presence of humans in our midst who have taken our speciesâ€™ first steps into BMI. Both advocates and opponents appear to already know the outcome of BMI, and in these imagined knowledge scapes, the research participants who are the true BMI explorers remain blurry figures, faceless and voiceless and powerless to make any contribution. (379)
He notes that,
While the questions are necessary, the form of speculative minding used to sketch possible answers serves largely to obscure rather than clarify the true benefits and harms likely to result from any recommended policy. Remaining wholly or mainly in imagined relation to imagined individuals with BMI means treating such individuals always as distant third persons, really as manipulable objects of oneâ€™s own story. No matter how strongly one professes concern for a person or group of people, if that concern emerges from and is elicited by wholly one-sided constructions of those people, the chauvinism of such one-sidedness will always overshadow the concern. (378)
Reducing things to “issues” or “problems” to be solved distances us from recognizing the flesh and blood human beings involved – “others” who have let become things rather than persons.