The UN’s World Health Organization’s new advisory committee on developing global standards for governance and oversight of human genome editing has indicated on 19 March, 2019 after its first meeting how it will work towards developing a strong international governance framework in this area. It is one more example of several new technologies that will also impact persons with disabilities. All the more reason for the creation of the new position for disability and technology at the Committee on the Rights of Persons with Disabilities of the United Nations this March.
It clearly indicates that technology already has such a great effect on human rights that the UN cannot any longer turn a blind eye to new, recently emerging technologies. The relevant Convention in question was adopted in 2006. At the time it was difficult to discern clearly the dilemmas and challenging issues we currently have to deal with.
Well, what issues do we have to deal with in terms of disability and technology now?
First, we have to understand the evolution of wearable devices (hearing aids, etc.), including exoskeletons. Whilst these items and tools are going to be an everyday issue and experience, we also have to scrutinize certain aspects relevant to privacy, accessibility, interoperability, as well as affordability, otherwise persons with disabilities could be excluded in society. At this point, in light of interoperability and conformity, we have to highlight that countries have an obligation to make sure customers can have access to those products and services without interference problems. This topic could also cover the so-called assistive technologies, as the Convention does; however, this area has seemingly been extended and I am convinced that this field indeed needs a new definition and interpretation, too.
Second, the evolution of the so-called invasive devices (e.g. cochlear implants for the deaf or implants for veterans to mitigate depression or schizophrenia), including brain and computer interfaces, could be part of our life to a much greater extent. This also raises interesting aspects or grave concerns such as the integrity of persons, as well as autonomy, liability and responsibility of their maintenance, too. Not to mention, who could bear the consequences of hacking and other malicious activities and to what extent? When it comes to competitiveness and employment, we also have to identify the weak points of technology in terms of ethical issues and fairness at social level.
Third, the evolution of DNA-related technologies, gene-editing (f.e. CRISPR-technology) included: certain issues could be relevant not only in terms of prevention (it is not the topic of the Convention, by the way), but also for adults with disabilities. (See the recent legislation on the so-called three-parented babies in the United Kingdom). It follows that the time will soon come in checking the balance between the medical aspect of disability and (re)habilitation in light of the human rights based model in accordance with the Convention. Modern, scientifically developed societies must handle this technology in a responsible and sustainable way. It will have a serious effect on almost everything we know in terms of social behaviour and drivers, not to mention social mobility. At the same time, we have to reinforce that the Convention is about ensuring free choices and not forcing persons (with disabilities) to adapt to only one solution, against their preferences regarding their bodies, capabilities and skills. Nevertheless, even the optional choices could also raise further concerns in a wider social context, too.
Four, the evolution of Artificial Intelligence-related services based on virtual assistants or even kinds of avatars, applications and the products built on them will create an entirely new momentum in modern societies. They are going to be extremely useful, not only for persons with limited mobility and/or multiple disabilities, but also for the blind, the hearing impaired, as well as persons with mental disabilities and autism. The possibility of early recognition and intervention services for disabled children (children with Autism, etc.) at home also exists. In light of education, our children will not only learn about facts to be memorized but also how to organize and synthetize those facts and data by triggering upper levels of skills in synthesizing for further specialization of knowledge.
Five, the evolution of robotics will also change everything that we believe in when it comes to societal consequences. According to current market estimates, by 2020 at least 5 million care robots at home will be deployed worldwide. It follows that independent living and inclusive education will also have an entirely different approach when it comes to humanoid robots and smart toys with emotions and programmed educational attitudes, as well as robot caregivers in institutions and at home. It will also transform the customs and habits of families and the current approaches towards work-life balance as well.
The future has arrived and it’s time to act.
By Laszlo Lovaszy Ph.D.
Focal point for disability and technology