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Society's Most Vulnerable Under Surveillance(7)

时间:2009-08-25 点击:

III. A Final Word
As shown, conventional paradigms of rights, or even traditional legal standards such as the 'best interests tests'143 fail to satisfactorily address the intricate issues raised by assistive technologies in the dementia context. Instead, what can best be described as a virtual legal vacuum prevails, relegating some of society's most vulnerable to an unexamined fate, characterized by our propensity to embrace assistive technologies prior to fully investigating the ethical dilemmas that they generate.

In an effort to improve on the current situation, this article seeks to spark meaningful multidisciplinary discussion on what appropriate safeguards may be developed – legislative or otherwise. This in order to address the ethical issues related to elder monitoring and to ultimately foster a "sensitive application" of new assistive technologies in a manner that allows technology to promote dignity in dementia care.

To borrow Margaret Sommerville's well-expressed words in a different context: "we must establish a "questioning framework" built on a transdisciplinary, transcultural and transsectoral base that can accommodate input from members of the community and persons with relevant expertise"144. The first step therefore is to actually ask some much-needed questions in order to increase understanding of the issues and allow for informed decision-making.


While it is certainly beyond the scope of this article to propose any clear resolution of the predicament, the following points may be put forward for reflection:

1. Advance Directives
In anticipation of a clearer and more permanent resolution, for the time being, it may be helpful for those diagnosed with Alzheimer's (or in the early stages of other illnesses resulting in dementia145) to avail themselves of advance directives146, expressing their wishes respecting the use of GPS to track them as their dementia progresses. Though not free of controversy147, what Ronald Dworkin calls "precedent autonomy"148 allows a now-capable person to control decision-making at a later point in time when she no longer has the capacity to do so149. Such pre-commitment would at the very least allow150 the patient to regain some authority151 over the use of new technologies to monitor her movements152. Thus, for instance, "[i]f the incompetent was previously competent, her earlier autonomous decisions regarding medical treatment can be projected into the future once she becomes153 incompetent. Even if the incompetent failed to make such advance decisions, her autonomy can be respected by taking the decision that she would have taken, based on evidence of her previously competent wishes, preferences and values. The best interests test is the key example of decision-making based on the protection of the incompetent's welfare interests, and can be used regardless of whether the incompetent was previously competent".


Having said this, advance directives are no more than ad hoc solutions. As noted, other considerations such as insurance and institutional liability154 – or even family pressure155 – may make these superfluous if use of these technologies becomes routine156. For this reason, this author support British scholars Hughes and Low's call for government supervision of the application of GPS surveillance technologies to dementia sufferers and others. Their suggestion to secure legislation that regulates collection of personal data through GPS devices generally and surveillance of vulnerable groups such as the aged or children specifically, is an urgent call for action meriting immediate attention here as well157. #p#分页标题#e#

In light of the above, it is posited that assistive technology should only be made available "in circumstances where it offers immediate therapeutic benefits of proven efficacy as well as a positive benefit-risk-ratio"158. In this vein, one author, dealing with GPS surveillance generally, has suggested that a model privacy law "regulate the collection and use of personal data with [both implantable and] nonimplantable [GPS] chips. Such a statute should legislate inalienabilities that place use-transfer restrictions on the personal information generated through wearable GPS devices"159.

That article's author, Paul M. Schwartz, further calls for institutions to "police the privacy promises and practices of wearable chip companies. Institutions are necessary to provide trading mechanisms to help with verification of interests in propertized personal data, and to enforce compliance with agreed-upon terms and legislatively mandated safeguards"160.


2. Part of a Greater Health Care Problem
While legislation specifically pertaining to the use of GPS technology for surveillance purposes (particularly with respect to the vulnerable) is of the essence, we must nevertheless remain mindful of the fact that this specific question cannot be separated from the greater issue of health care rights.

Indeed, contrary to Hughes and Low's call for government regulation, other English scholars responding to that groundbreaking article, argue that the answer lies not in legislation but in addressing the root causes leading to the temptation to resort to such quick fixes. Namely, the answer, they put forward, is to be found in "adequate funding of services to the population with dementia across the myriad of living situations". In their words, "if home care were supported properly the use of these devices could be lessened. If nursing homes were at all adequately staffed and funded perhaps they could be eliminated all together"161.

Certainly, inadequate funding of institutions and support for domiciliary care162, limited resources, desperate need for some form of relief from the often unbearable burden placed on caregivers, cannot but lead to a certain temptation to reflexively resort to technology that offers the promise of reprieve. In consequence, it is suggested that facilitating carers' life (particularly that of home-carers) would help render this technology a redundant last resort.




 
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