Principal, Xamax Consultancy Pty Ltd, Canberra
Visiting Fellow, Department of Computer Science, Australian National University
Prepared for publication in The Canberra Times of Wednesday 28 March 2001, p.11, under the erroneous sub-editor's title 'Privacy is paramount in a ghoulish business'
Version of 27 March 2001
© Xamax Consultancy Pty Ltd, 2001
This document is at http://www.anu.edu.au/people/Roger.Clarke/DV/BodySnatchers.html
There's been a spate of reports recently about the appropriation of parts from the dead. Early this week, the head of Sydney's Glebe morgue was stood down, pending an inquiry into revelations on Sunday morning television that he and other staff stabbed and hit bodies to simulate injuries as part of their forensic investigations.
In the A.C.T., media reports have hastily assured us that ethical and practical regulations ensure the [local] institution's autopsies and body-part examinations are conducted in accordance with appropriate standards.
(Is that really much of an assurance? The principle that I subscribe to is that "wolves regulate wolves for the good of the wolves, not the sheep". The body-part snatchers with hifalutin academic qualifications are asserting that they aren't subject to any laws, just to their own self-regulatory arrangements, and that we should 'just trust doctor'!).
To this long-term privacy advocate, it's great that the public has made its voice heard about the importance of bodily privacy, and that bureaucrats and governments have had to make rapid adjustments.
During recent decades, there's been a lot of interest in the privacy of personal data. Our private space has been intruded on by combinations of increasingly sophisticated information technology, increasingly data-intensive administrative practices, increasing distrust of citizens by governments, and increasingly intense consumer profiles used by marketers to manipulate our behaviour.
There have also been concerns about the privacy of personal behaviour, as councils have used the placebo of video-surveillance to pretend to address public safety, and as citizens have been, for the first time ever, denied access to main roads like Melbourne CityLink unless they provide their identity.
The privacy of personal communications has also been taking a hammering. The Privacy Commissioner has abjectly failed to act as the watchdog we thought his Office was meant to be, and has instead calmly stated that employers are entirely free to monitor employees' email and web-usage, even though their surveillance of person-to-person and telephone conversations is subject to significant legal limitations. Meanwhile, mobile phones are currently being 'upgraded', with virtually zero public discussion, to ensure that the location of the device (and hence of the person carrying it) is known to the system to within a few dozen metres.
With all of those incursions going on, privacy of the person has often been overlooked. Compulsory innoculation, and compulsory blood transfusions are things we occasionally discuss. But now we're catching the American disease of compulsory extraction of body fluids and measurement of bodily characteristics from many people, under many circumstances, for purposes as diverse as criminal investigations, substance abuse testing, and entry to employers' premises.
Advocate don't claim that privacy is an absolute right. The key is always to appreciate the conflicting interests, and look for balance. And that makes the exploitation of parts of our dead bodies a challenging issue.
Let's take as given that at least some people find the idea of the use of parts of their own or their dependants' bodies to be at least grim, and even de-humanising to the point of unacceptability.
On the other hand, there's a real public interest in bodies and body-parts being available for transplant, examination, experimentation and storage. Even if you share my view that no-one, least of all doctors and medical researchers, should be trusted to regulate themselves, we're nonetheless dependent on those professionals for advances in medicine.
Those advances in turn depend on an understanding of how the body works, how it can be assisted to recover from injury and illness, and what effects new diseases have on different parts of the human body. In such cases as such as Alzheimer's and CJD, the part of greatest interest is that (to many of us) particularly delicate organ, the brain.
Beyond the medical research needs are those of forensics, both the investigation of harm to particular persons, and the research needed to assist those investigations reach confident conclusions. Pathologists need to understand abnormalities, so that violent acts against individuals can be investigated, and strong evidence presented to the criminal courts.
So, once the knee-jerk community horror phase is over, what approach should our society take to the exploitation of our dead bodies?
Firstly, I'm no anthropologist, but I'd expect the appropriate balance to vary a great deal between cultures. For jurisdictions in which it is not reprehensible to permit transplant, examination, experimentation and storage (like, I suggest, most of the countries in our reference group), it seems to come down to a question of what authority is needed.
There are bound to be circumstances in which statutory authority is appropriate, in some cases irrespective of the views of the individual and the next-of-kin. Reasonable grounds for suspicion of foul play is one such circumstance (in part because the next-of-kin sometimes has good reasons for wanting their relative to be quietly buried, without any investigation).
Another public interest that might be seen to justify legal authority over-riding the wishes of the individual or the individual's relatives is the investigation of emergent diseases. Examples include Alzheimer's, CJD, HIV and the succession of mystery fevers that come out of Africa, the Tropics, Mars or a secret U.S. weapons laboratory (depending on which theory you prefer).
Leaving aside such exceptional circumstances, however, surely the authority should be consent-based. But even that approach has various flavours. The favourite has to be actual consent. Mechanisms to support consent include donor-cards in wallets, tick-boxes on drivers' licences, and codes defining under what circumstances and with what processes which relatives or friends may make such decisions on behalf of the deceased. It appears, however, that there may be some inadequacies in those schemes that need to be addressed.
The issue also arises as to what it is that a consent encompasses. Some people will be happy to tick the 'anything' box; but others will prefer to preclude long-term storage, or use of a particular organ, or just to permit transplant purposes and nothing else.
Unfortunately, such so-called 'opt-in' approaches, coupled with progress in many areas of organ transplantation, has meant an inadequate supply of high-quality body-parts to give new leases of life to people whose lives are in principle capable of being sustained for long periods. Secondarily, it risks starving researchers of material to study.
An alternative approach appears to have been adopted in some countries. The facts are very murky, not least to the citizens of the countries concerned; but the laws of France and Spain are understood by at least some observers to embody a presumption of consent. This means that, in the absence of evidence of a denial of consent, French and Spanish hospitals are legally empowered to extract organs for transplantation. It's very much to be hoped that such schemes feature opt-out registers that are widely advertised, well-maintained, readily and quickly accessible by hospitals, and consulted prior to any action being taken.
Personally, I've carried a donor's card for many years, and would happily extend it to the examination, experimentation and storage of my body or parts of it.
But I emphatically support the right of every individual to make such decisions for themselves, subject to over-ride only where both authority of law and substantial justification exist. If we do less than that, then my lifetime will have seen a reduction in civilisation, and a reversion to barbarism, to an extent that would and should horrify us all.
Roger Clarke is a consultant, researcher and public interest advocate with a quarter-century's experience in privacy matters. He maintains a substantial privacy resources site at http://www.anu.edu.au/people/Roger.Clarke/DV/, and can be reached at Roger.Clarke@xamax.com.au.
Go to Roger's Home Page.
Go to the contents-page for this segment.
Send an email to Roger
Created: 20 March 2001
Last Amended: 27 March 2001
|These community service pages are a joint offering of the Australian National University (which provides the infrastructure), and Roger Clarke (who provides the content).|
| The Australian National University|
Visiting Fellow, Faculty of
Engineering and Information Technology,
Information Sciences Building Room 211
Pty Ltd, ACN: 002 360 456|
78 Sidaway St
Chapman ACT 2611 AUSTRALIA
Tel: +61 2 6288 1472, 6288 6916