Rights, Justice, Power

By Marcia Rioux

Starting with a view of the world that assumes that all people are equally valuable and equally entitled to rights, justice and power has an important effect on the way an issue is addressed. The development of technology is an example. To address the ethical, social and legal debates surrounding the uses of technology from this perspective requires us to focus on the ways in which technologies can enhance and expand values that respect people’s rights and increase social well-being. The uses and context of technological developments which create special problems from the perspective of respect for persons, beneficence, justice and the allocation of resources have then to be identified and eliminated.

Two specific examples provide illustrations of what a rights-based approach to technological development might look like. Both of these are currently recipients of large financial and scientific investment and too little scrutiny and regulation.

One is the issuer of behaviour modification technology widely developed and practised with people who are said to have "severe behavioural problems" -- including both self-injurious behaviour and aggressive behaviour. The other is the issue of new reproductive technologies. These two types of technological development are of particular concern to people with disabilities. Although they raise different sets of concerns, in each case, people with disabilities are particularly vulnerable to the adverse consequences of their use.

Within the past few years, a number of technologies have been developed to control self-injurious and aggressive behaviour. There are people-prodding electrical shock systems, there are full body suits with computer-controlled electrical shock systems, there are electronically-controlled shock helmet systems, there are electronic white noise generators, and a whole myriad of drug therapies. This is the dark side of technological development. Such technology particularly affects people with developmental or psychiatric disabilities. It is qualitatively different from the technological development that makes computers accessible to people who have little use of the upper part of their body, advanced motorized wheelchairs that enable greater mobility for those who have limited use of their legs and arms or the development of accessible buses.

But the development of therapeutic technology affects other types of disability as well. One of the major concerns is that the decision to undertake technological and drug research and development fails to take into consideration the views of the people who it will supposedly benefit. Some of the developments are simply benign (or irrelevant) in terms of their impact, interesting from the scientific perspective but of limited use to the consumer. Some are beneficial in a real sense, and some are detrimental. It is critical that there be consultation before funds are allocated to the development of technology and there be an evaluation of the potential for benign or discriminatory legal or ethical distinctions.

The development and use of behaviour modification technology is rationalized as a means to control behaviours which are determined to be so severe, self-injurious or aggressive that no other technique for controlling these behaviours will work. while they are claimed to be measures of "last resort", once developed they are marketed and used. There are a number of critical questions this raises. What does society and what do the developers of technology mean by "success" when they say these work? Why do non-technological -- that is, social and environmental -- solutions receive so little research attention? At what point does an action cease to be an ethical good, regardless of efficacy? What is the nature of treatment or therapy? How does one determine that a person has indeed consented to the use of the latest technology on themselves? At what point is it just to use technological solutions because they are in a person’s best interests? How can we ensure that individuals can refuse a treatment and still receive the care and services they need?

The starting point for discussions about the use of technology is unfortunately often made after it has already been developed. Waiting until then to initiate the debate is in itself problematic. Research and development cost a great deal and individuals become committed to the technological solution in the earliest stages. The conceptualization of the problem as one that has a solution found in technology often precludes research and development in other areas. Ut assumes that the problem rests within the individual, rather than placing the emphasis of the research question on other causes and needs. For example, people who exhibit challenging behaviours typically do so in environments where they are subject to continuous management and control, where they are deprived of ordinary human interactions and where they have few opportunities to experience life in the community in ways that others do. It is scientifically imprudent and against common sense to assume that the individual’s challenging behaviours have no relation to this controlling environment, to the techniques of control or to the people who are using those techniques. Consideration of environmental factors, such as the longitudinal effects of certain kinds of control and power, is frequently left out of the analysis of the behaviour of the person. In the absence of knowledge about where the real problem lies, it is questionable to proceed with the development of behavioural control technology/treatment that is predicated on the individual being the principal source of the problem.

The use of aversive technology raises ethical issues as well. At a very general level, the point at which an action ceases to be an ethical good regardless of its efficacy must be clarified. A decision has to be made whether technology that is ethically unacceptable is ever permissible, and if so, under what circumstances. In other words, where should society draw the line between what it knows is expedient, on the one hand, and what it believes is just, on the other? Things that are legally permissible may be ethically objectionable or prohibited. The use of depo-provera as an alternative to sterilization is a case in point.

Aversive technology also raises more general questions about society’s obligations to the individual citizen. what, for example, are society’s obligations to ensure that forms of "care" other than the use of behavioural management and punishment are made available in meaningful ways to individuals who have a disability and who need service or support? Is technology to be a substitute for the changes necessary to enable a citizen to integrate into the social and economic structures? Does this mean that whatever is the easiest and least costly solution is to be the end goal of the development of technology? And if so, is this to be generally applicable in society or only where the population in question is considered less worthy?

The lines between punishing technology, discriminatory technology and liberating technology must be carefully drawn and socially and legally regulated to ensure that some groups in society, particularly those with disabilities, are not disproportionately affected.

The case of new reproductive technologies again raises scientific, social, ethical and legal issues. New reproductive technologies include such procedures as in-vitro fertilization, genetic engineering and prenatal screening, which again raise questions about the impact of technology on people with disabilities. All of these procedures focus to some degree on enhancing the chances of producing healthy, able-bodied babies. The technological agenda in these areas risks the ethical and social transformation of the technological advances from a central concern for the well-being and potential of all people into an imperative to reduce or eliminate birth disability from the population. Because it is possible to change the nature of the fetus or eliminate it, there is a potential for people to feel they have to use that more intrusive technology. In this way, there is a dangerous tendency towards the normalization of procreative and genetic technologies.

The very emergence of research and development in this area has triggered within the disability community a sense of outrage, insecurity and inequality. Designating a class of people who are insinuated, through the research and development of reproductive technology, to be unnecessary and undesirable is questionable by any standard. It is also inconsistent with the principles of equality and justice which underpin civilized society.

The disability movement has faced an uphill battle in its attempts to become recognized as a disadvantaged group which deserves, indeed mandates, an equal share of well-being and social justice. To the already disproportionate liability that people with disabilities have had to bear, because of the lack of resources and services to support their participation, in order to participate in society, is added the further implication that technology ought to be developed which would encourage their elimination at the reproductive stages.

As a start, this is based on a false presumption. even if genetic diagnosis were perfected so it could be carried out early and non-invasively, it could never be effective in eliminating disability. 85% of adult disability is caused after the age of 13 and more than 90% of infant disability is due to social, not genetic, causes. What is really troubling about this over-medicalization and geneticization of disability, besides its injustice, is that it obscures the basic socio-economic contributors to disability (including malnutrition, physical abuse, stress, exhaustion, and toxicity from environmental pollution). By obscuring these causes in over-emphasizing the genetic causes, social attention and resources are deflected into medical technology and professional salaries rather than into providing the nutrition, social support and other low-tech, non-medical measures designed to minimize infant disability or to counter its impact. Once again, technology is suggested as an easy solution to our problems -- a vision of a technological utopia is proffered.

In other words, even if we thought it desirable, disability could not be prevented by genetic means. The idea of valuing the perfectly able-bodied human is both irrational and a dangerous eugenic premise.

We are already seeing some of the negative repercussions of genetic monitoring and selection. In some countries, national and state governments are already compelling doctors to urge genetic counselling and abortion for fetuses which they believe will be costly if allowed to come to term. DNA databanks are already in use in criminology and being proposed as a mechanism to predict suitability for employment. The possibility of whole new forms of discrimination are raised by this technology. These include pressures for sterilization, threats to remove medical insurance coverage unless one aborts a fetus with a disabling condition (cases have already been documented of such an occurrence) or the denial of employment based on genetic susceptibility to hazardous workplace substances.

There must be a comprehensive review of what forms of distinction in recourse to new reproductive technologies, and in support of reproductive health research, may constitute discrimination on grounds of disability.

People with disabilities have the right to receive the full benefits of technological research, development and scientific progress. However, technological research and development is not a value-free enterprise, as it is so often held to be by the scientific community and by those who have been convinced that science is an objective enterprise. Science is not pre-eminent to these other issues. Without recognizing this fact, science threatens to mask the need to examine technology within a social, moral, cultural and legal context. It is imperative that social controls operate to restrict the real and potential hazards of technology and the biorevolution and to stop the legitimization of research and development which operates to obfuscate the advances that are being made towards greater equality and rights for those with disabilities. Wariness is in order wherever technological advances and scientific reconstruction of problems threaten to victimize less advantaged persons and fails to take into account their experience. Scientists and those who apply technology have no legitimate claim to be the moral gatekeepers of society -- to enforce their standards, values and interests, like any form of moral gatekeeping, is only another form of discrimination based on social prejudices. If the principles of justice, respect for persons and nondiscrimination are to be upheld then the development and use of technology must be subjected to the same legal and social scrutiny as housing, employment and educational opportunity receive. Further, the social and human impact of the proliferation of technological development must be evaluated, based on the experience of those who are at the receiving end of technology. The control of technology ought not to be left in the hands of doctors and hospitals, medical, industrial and military laboratories, and pharmaceutical and chemical companies.

Taking into account the values and interests of all groups in society, especially those who will be disproportionately affected by its use, has to be the minimum obligation in the funding, research and development of technology.

(Marcia Rioux is the Executive Director of the Roeher Institute in Toronto.)