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Social and ethical issues of cochlear implants
Complex issues
Implants for children
Medical ethics
Cochlear - MAIN

Complex issues
The Deaf community is considered to be a culture within multicultural Australia and as such it has a distinguishing language and a way of living which is unique. Technological developments in the latter part of the twentieth century have led to a re-thinking of what it means to be deaf or hearing impaired. For adults who have been deaf all their lives few consider cochlear implants. They have learned how to communicate and function in both the hearing and non-hearing community. For adults who have lost their hearing later in life the cochlear implant is a way of returning to the way of life they had before their hearing loss.

For parents of young children there are many issues to consider. If the child is deaf from birth (pre-lingual hearing-impaired) the issues are different to those who have become deaf after learning to speak (post-lingual hearing-impaired). The situation is also different if the child is born into a deaf or hearing-impaired family as opposed to a hearing family. The socialisation of the child (how they learn to function in society) will be influenced by this family situation and how the parents choose to manage the hearing impairment.

This extends to educational opportunities as well. The aim of integrating hearing-impaired students in mainstream schools is to enhance their socialisation into the hearing community, but many in the Deaf community believe it accentuates differences and students would be better served in a specialist education centre.

Although the social and ethical issues relating to cochlear implants are complex there are two different cases to consider:

  • implants for adults who lost hearing in later life and make their own decisions. These adults have already learned how to speak, that is, they are post-lingual.
  • implants for deaf children where the decision is made by their parents.

The first case, implants for adults, is usually seen as a positive step. The decision is made by the recipient and is based on their own personal situation.

Implants for children
The issue of cochlear implants for children, however, is more controversial. The reasons for this include:

  • human rights
  • cost
  • loss of Deaf culture
  • education.


Human rights
It is a human right for every person to have access to medical technology if it will improve their quality of life. Children who are hearing-impaired fit into two categories:

  • pre-lingual hearing impaired: those who lost their hearing before learning to speak
  • post-lingual hearing impaired: those who lost their hearing after learning to speak.

Dr Gaye Nicholls says for post-lingual children:

rehabilitation means gradually restimulating auditory language processes they had previously developed. They need to be taught again to understand language through hearing, even though the signal they now hear is quite degraded and different from normal speech. (Epstein, 1989: 81)

And for pre-lingual children:

Children who are deaf from birth, however, will be learning speech and language for the first time with this new signal. But they have two big advantages denied the adult implantees. Firstly their brain has plasticity to adapt to and respond to a new stimulus right up to adolescence. Secondly, very young children are in the normal period for acquiring language. (Epstein, 1989: 81)

This is one view of implants for children. The Australian Association of the Deaf (AAD) has another view and it is outlined below. For further information refer to the AAD policy on cochlear implants.

AAD's views on cochlear implant should be seen in the context of the socio-cultural perspective on deaf people's lives. Deaf people do not see deafness as something which needs to be cured. Cochlear implant programs, however, tend to see deafness as a pathological condition which is open to medical and technological intervention. The disparity between the two views of deafness has led to much of the current debate about the cochlear implant. (AAD, 2001)

Cost
The AAD believe that the large sums of money financing cochlear implants could be better used to improve education and literacy among deaf and hearing-impaired people.

The needs of deaf people are many and diverse: special education services, provisions for access such as interpreters and notetakers, and technological support such as telephone typewriters (TTYs) and television decoders all enable deaf people to lead comparatively normal lives and to contribute to society. A cochlear implant does not necessarily remove the need for such services.
(AAD, 2001)

Loss of Deaf culture
There is fear from the Deaf community that there will be a loss of Deaf culture. AAD believes there is a lack of understanding by parents and the medical profession of the value of Deaf culture and an assumption by hearing people that because deaf people are different they are inferior and want to be able to hear. The Deaf community believes making everyone hearing is reducing the diversity in our society.

The language and culture of the Deaf community was recognised in 1987 as part of Australian multicultural society. (National Policy on Languages 1987)
For more information about deaf culture:
http://www.vicdeaf.com.au/aboutus/deafcommunity/deafcommunity.htm

Education
There is controversy over how deaf children should be educated:

  • aurally using hearing aids
  • orally with lip-reading
  • using sign language.

Many in the Deaf community feel deaf children should be educated in a way that makes use of their talents and abilities rather than focussing on abilities they lack through oral education. Education materials are produced to enhance the transfer of information and may be presented in three ways: Auslan, signed English and spoken English.

Students with a hearing disability may be taught in specialist education centres or in mainstream schools. However the current trend is mainstreaming for deaf and hearing-impaired children, including those with cochlear implants.

While the Internet offers educational opportunities for most people, those with disabilities may need additional software and hardware devices and well-designed web pages to gain similar opportunities. For example, for students who are deaf or hearing impaired, audio-based elements on the Internet are useless. However a text-based narrative can be provided. The same situation occurs with video clips, while they may have the benefit of the visual element they will need a text-based narrative.

In Melbourne in February 1995 the An Enabling Vision: Open Learning and Students with a Disability conference was convened. One of the conference outcomes was a recommendation for "the development of standards and guidelines which would assist with uniform advancement of open learning for people with disability. Standards and guidelines should apply to both public and private providers of education and training." In particular for the "development of standards for all aspects of communication technologies and delivery systems."

This original concept was broadened to include hardware and software aspects of Information Technology. The aim now is the "development of an Australian standard for the design of hardware and software for universal access that will ensure that the information superhighway and all the benefits are available to the broadest possible range of users."

As a result of this post conference process, a group facilitated by the Open Learning Technology Corporation (OLTC) has been working on a developmental draft paper for submission to the Australian Standards Association. (Special Education Directorate, 2001)

For further information on accessiblity and computers see:

Adaptive technology resources centre (University of Toronto)
http://
www.utoronto.ca/atrc/
Computer resources for the hearing impaired
http://www.apple.com/education/k12/disability/hearing/
Accessibility features
http://www.apple.com/education/k12/disability/easyaccess.html

Medical ethics
The ethical issues related to cochlear implants raise such questions as:

  • the ethics of medical procedures:
    Does it benefit the patient?
    Is the patient able to make their own decisions?
    Will the implant cause physical or social harm?
  • the ethics of viewing a disability as a negative quality.

In the value-laden process of medical evaluation, disability is assumed to be negative; objective clinical data are given greater weight than the actual experience of the individual with the disability.

…The view articulated by the World Federation of the Deaf and proponents of deaf culture rejects the infirmity model of deafness developed by medicine. They hold that theirs is a minority experience of language and culture that differs from and is possessed by mainstream society. Indeed the deaf claim that the cochlear implant is just another example of the values and language of the majority being imposed on a minority. (Stewart-Muirhead, 2000: 1)

Ethical decision-making regarding cochlear implantation in young children needs to be examined at both the individual and societal levels. The discussion must honour the contribution of all the major stakeholders. Researchers, clinicians and the public must read beyond the excitement of cochlear implant technology and temper enthusiasm with serious ethical reflection. (Stewart-Muirhead, 2000: 2)

  • the ethics of using animals for medical research
    Should technology be tested first on animals before human clinical trials begin? Graeme Clark performed experiments on animals for ten years before experimenting on humans.

Activity
1. Is the cochlear implant life-sustaining or life-enhancing technology?

2. Debate the following topic:

It is acceptable to use animals for medical experimentation if there are potential gains for humans.

For further information on the ethical and social issues of cochlear implants check these sites:

US documentary: Sound and Fury
SBS Insight: Sound Decisions.
Deaf World Web CI articles.

It should be remembered that cochlear implant technology is rapidly changing. When you read comments about the implant, you need to examine which cochlear implant technology was used. A recipient in 1985 may have a different experience to someone in 2000.

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