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Bioethics and eHealth - for example - Telecare, Surveillance, and the Welfare State

Key stakeholders in the project management of an eHealth project include, clinicians, nurses, software engineers, Senior Management, Project Manager, statistician, healthcare administration, etc. But often I think a key player that should be added more to the list is a Bioethicist.  This article from the American Journal of Bioethics - Telecare, Surveillance and the Welfare State - is  illustrative about why a bioethicists on the team may be essential. Unless you have some sort of institutional access you might not be able to read the whole article. In this article, the Bioethicists argue the pros and cons of surveillance technology for the elderly who are being monitored in their homes for their chronic health conditions. The authors come out in favour of the surveillance technology - it is not Big Brother - but it all depends on how a chronic a condition a senior might have. Anyway, I value the point of view(s) of bioethicists because they tend to see healthcare differently from front line workers and administrators.

Here is the abstract:

Am J Bioeth. 2012;12(9):36-44. doi: 10.1080/15265161.2012.699137.

Telecare, surveillance, and the welfare state.

Sorell T, Draper H.

Source

University of Birmingham, UK. t.sorell@bham.ac.uk

Abstract

In Europe, telecare is the use of remote monitoring technology to enable vulnerable people to live independently in their own homes. The technology includes electronic tags and sensors that transmit information about the user's location and patterns of behavior in the user's home to an external hub, where it can trigger an intervention in an emergency. Telecare users in the United Kingdom sometimes report their unease about being monitored by a "Big Brother," and the same kind of electronic tags that alert telecare hubs to the movements of someone with dementia who is "wandering" are worn by terrorist suspects who have been placed under house arrest. For these and other reasons, such as ordinary privacy concerns, telecare is sometimes regarded as an objectionable extension of a "surveillance state." In this article, we defend the use of telecare against the charge that it is Orwellian. In the United States, the conception of telecare primarily as telemedicine, and the fact that it is not typically a government responsibility, make a supposed connection with a surveillance state even more doubtful than in Europe. The main objection, we argue, to telecare is not its intrusiveness, but the danger of its deepening the isolation of those who use it. There are ways of organizing telecare so that the independence and privacy of users are enhanced, but personal isolation may be harder to address. As telecare is a means of reducing the cost of publicly provided social and health care, and the need to reduce public spending is growing, the correlative problem of isolation must be addressed alongside the goal of promoting independence.

p value less than 0.05

I received an email about a Research Integrity conference and checked out the keynote speakers. One of them was Dr. John Ioannidis. This lead to me to what I discovered was one of the most cited research papers out there "Why Most Published Research Findings are False". This article touched off a nerve or two in me, and eventually I will try and read it to at least a level of comprehension, because it is very mathematical. What struck me was the hypothesis that:

Several methodologists have pointed out [9–11] that the high rate of nonreplication (lack of confirmation) of research discoveries is a consequence of the convenient, yet ill-founded strategy of claiming conclusive research findings solely on the basis of a single study assessed by formal statistical significance, typically for a p-value less than 0.05.

I took courses in health research methodology and was taught how to read medical literature and the p value inherent in most of the journal articles always confused me.  I still don't know the significance of the p value, but this I know: it is not good if family doctors, relying on evidence- based medicine to prescribe innovative therapeutic drugs, are relying on these articles' conclusions and p values for their predictive value to help me. They should be relying on the gold standards of medical evidence: systematic reviews and meta-analysis - the highest forms of "unbiased" research. Atlantic magazine has a great article "Lies, Damn Lies, and Medical Science" (in plain English) about Ioannidis and this medical dilemma.

If you want to check out why I might be confused by what a p value is, check out this definition in wikipedia:

In statistical hypothesis testing, the p-value is the probability of obtaining a test statistic at least as extreme as the one that was actually observed, assuming that the null hypothesis is true.^[1] One often "rejects the null hypothesis" when the p-value is less than the significance level α (Greek alpha), which is often 0.05 or 0.01.

Although there is often confusion, the p-value is not the probability of the null hypothesis being true, nor is the p-value the same as the Type I error rate.^[2] A Type I error in statistics is the incorrect rejection of the null hypothesis. In this case the hypothesis was correct but wrongly rejected. In a Type II error, however, the null hypothesis was not rejected despite being incorrect. This results in the failure of rejection of incorrect assumptions.

The best place to learn about all of this is in one of the classics of evidence-based medicine by one of the authors who coined the term "evidence-based medicine", Dr. Gordon Guyatt, who teaches and does research at McMaster University:

Users' Guides to the Medical Literature: Essentials of Evidence-Based Clinical Practice, Second Edition (Jama & Archives Journals) by Gordon Guyatt, Drummond Rennie, Maureen Meade and Deborah Cook (May 21, 2008)

Let's pool our medical data and use consent in the EHR

This is a brilliant TED talk by John Wilbanks advocating for a voluntary big data commons for medical research. The < website > they have is fascinating from a bioethics/research ethics/consent point of view. Unfortunately, I would have to disagree that such a mechanism is necessary if more people were able to consent to have their medical data released for research through the Electronic Health Record or their Personally Controlled Health Record. I have looked for some sort of venue where citizens could donate their medical data to science, instead of just their mortal remains.
Uploaded by eHealthInfoLab on Jan 5, 2012 "EHR systems offer enormous potential to improve Canada's health system; however, privacy-related information governance issues must be resolved so that personal health information continues to be handled securely, confidentially and in compliance with legal and ethical standards. Joan Roch describes the work of the Canada Health Infoway-sponsored pan-Canadian Health Information Privacy (HIP) Group to resolve these issues. She focuses on privacy issues that emerge as EHR information moves across Canadian jurisdictions, and has developed a series of 'common understandings' to support such movement in an appropriate and privacy-protective manner. Ms. Roch is Chief Privacy Strategist at Canada Health Infoway." And here is the problem for the personal health information flow to medical research - privacy and security regulations. It is not an insurmountable problem, as data de-identification becomes more rigorous, and the mechanisms of online consent become more robust.

Automatic Tape-collecting Lathe Ultramicrotome (ATLUM) device - In search of Immortality

I have always thought that one of the goals of ehealth was towards life extension, and this research article is indicative of the advances being made towards immortality, specifically - mind uploading - and a new word that I wonder might make head way in the English language lexicon - connectomics!

The strange neuroscience of immortality

July 30, 2012

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Kenneth Hayworth with his Automatic Tape-collecting Lathe Ultramicrotome (ATLUM) device (credit: Kenneth Hayworth)

Neuroscientist Kenneth Hayworth believes that he can live forever, the Chronicle of Higher Education reports. But first he has to die.

“The human race is on a beeline to mind uploading: We will preserve a brain, slice it up, simulate it on a computer, and hook it up to a robot body,” he says.

He wants that brain to be his brain. He wants his 100 billion neurons and more than 100 trillion synapses to be encased in a block of transparent, amber-colored resin — before he dies of natural causes.

The connectome grand theory

To understand why Hayworth wants to plastinate his own brain you have to understand his field — connectomics, a new branch of neuroscience. A connectome is a complete map of a brain’s neural circuitry. Hayworth looks at the growth of connectomics — especially advances in brain preservation, tissue imaging, and computer simulations of neural networks — and sees a cure for death.

Among some connectomics scholars, there is a grand theory: We are our connectomes. Our unique selves — the way we think, act, feel — is etched into the wiring of our brains. Unlike genomes, which never change, connectomes are forever being molded and remolded by life experience.

A human connectome would be the most complicated map the world has ever seen. Yet it could be a reality before the end of the century, if not sooner, thanks to new technologies that “automate the process of seeing smaller,” as Sebastian Seung puts it in his new book, Connectome: How The Brain’s Wiring Makes Us Who We Are.

Hayworth looks at the growth of connectomics — especially advances in brain preservation, tissue imaging, and computer simulations of neural networks — and sees something else: a cure for death. In a new paper in the International Journal of Machine Consciousness, he argues that mind uploading is an “enormous engineering challenge” but one that can be accomplished without “radically new science and technologies.”

Hayworth has founded the Brain Preservation Foundation, which offer a cash prize for the first individual or team to preserve the connectome of a large mammal. A dependable brain-preservation protocol is possible within five years, Hayworth says. “We might have a whole mouse brain preserved very soon.”

The foundation has published a Brain Preservation Bill of Rights on its Web site. ”It is our individual unalienable right to choose death, or to choose the possibility of further life for our memories or identity, as desired,” the document declares.

Hayworth’s brain-preservation and mind-uploading protocol

Before becoming “very sick or very old,” he’ll opt for an “early ‘retirement’ to the future,” he writes. There will be a send-off party with friends and family, followed by a trip to the hospital. After Hayworth is placed under anesthesia, a cocktail of toxic chemicals will be perfused through his still-functioning vascular system, fixing every protein and lipid in his brain into place, preventing decay, and killing him instantly.

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Preserved in amber resin (Credit: Bad Robot/Fringe)

Then he will be injected with heavy-metal staining solutions to make his cell membranes visible under a microscope. All of the water will then be drained from his brain and spinal cord, replaced by pure plastic resin.

Every neuron and synapse in his central nervous system will be protected down to the nanometer level, Hayworth says, “the most perfectly preserved fossil imaginable.”

Using a ultramicrotome (like one developed by Hayworth, with a grant by the McKnight Endowment Fund for Neuroscience), his plastic-embedded preserved brain will eventually be cut into strips, and then imaged in an electron microscope. The physical brain will be destroyed, but in its place will be a precise map of his connectome.

In 100 years or so, Hayworth says, scientists will be able to determine the function of each neuron and synapse and build a computer simulation of the mind. And because the plastination process will have preserved his spinal nerves, the computer-generated mind can be connected to a robot body.

“This isn’t cryonics, where maybe you have a .001 percent chance of surviving,” he said. “We’ve got a good scientific case for brain preservation and mind uploading.”

REFERENCES:

• Kenneth J. Hayworth, Electron Imaging Technology for Whole Brain Neural Circuit Mapping, International Journal of Machine Consciousness, 2012, DOI: 10.1142/S1793843012400057

RELATED:

• ‘Mind uploading’ featured in academic journal special issue for first time
• A Connectome Observatory for nanoscale brain imaging

American Journal of Bioethics - blog or journal?

http://www.bioethics.net/ If had an extra life, I would no doubt be spending more time reading the amazing news feeds from the journal of bioethics. There are so many interesting topics under discussion, and so many new ideas. I subscribe to this by email and there is never enough time in the day to catch up.