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‘’to provide people with Disabilities the opportunity to live their life of choice to their fullest potential’’ Ethics is where ‘the wellbeing of the human subject (sic) should take precedence over the interests of science and society’ World Medical Association Declaration of Helsinki (2000) article 5. While there are policies and procedures that govern the quality of life of both service users and staff within any organisation, there are occasions when the rights of a service user may be unwittingly restricted. There are also situations where decisions are made that may not always be in the best interest of the service user. In line with
other organisations the purpose of for staff, service users, families or advocates to present any ethical concerns that arise and/or represent a restriction or breach of an ethical principle in providing services to individuals with an intellectual disability attending the service. It is also the role of the ethics committee to access good practice guidelines for people with an intellectual disability and ensure that staff are aware of current legislative and national standards of care for people with disabilities (UN convention on human rights, HIQUA standards of care, Disability Act, relevant professional codes of practice etc.) One is in relation to research and the second is in relation to service/clinical issues. Research
The main role of the ethics committee is to ensure that the rights and interests of the participants are protected and that there is a balance between advancing knowledge against any discomforts or risks for the participant. Consent to participate must be informed, voluntary and free from deception. It is the duty of all researchers to be familiar with documentation on the rights of individuals with disabilities and with up to date data protection legislation. The procedure for submitting research proposals can be downloaded from the ethics folder on the Foundation’s website www.stjosephsfoundation.ie Service
Issues
One of the functions of the ethics committee is to promote best practice in service provision for individuals with intellectual disabilities and their families. Where there is an opinion that there is a rights restriction or a significant breach of an ethical principle in respect of an individual with an intellectual disability attending the service, it may be referred to the ethics committee for an opinion or recommendation The procedure for submitting service issues can be downloaded from the ethics folder on the Foundation’s website www.stjosephsfoundation.ie Samples of issues that come to ethics committees can include the following:
Composition
of the committee (2011)
Dr.
Martin O’Donnell, Honorary Medical Officer Dr. Mr. John
O’Shaughnessy, Parent’s Representative (Children) Ms.
Eileen Fehin, Parent’s Representative (Adults) Mr. Ms. Ms. Mary
O’Dwyer, Manager of Children’s Services Ms. Chair Dr. Secretary Ms. Mary
O’Dwyer, Manager of Children’s Services The Dates for
2011 are as follows: 7/7/2011 Application
forms and material to be submitted 1 week before the above dates. Replies
will be given within 10 days of the committee meeting or as near to as
possible. Applications to be submitted to Ms All enquiries are dealt with confidentially.
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