Chapter

Working with adults with incapacity

Susan Hunter and Lisa Curtice

in Private and confidential?

Published by Policy Press

Published in print July 2008 | ISBN: 9781861349064
Published online March 2012 | e-ISBN: 9781447303077 | DOI: http://dx.doi.org/10.1332/policypress/9781861349064.003.0011
Working with adults with incapacity

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This chapter considers the issues affecting the ownership and use of personal data about people with learning disabilities, which highlight the contradictory imperatives in policies that seek to protect the interests of vulnerable adults while at the same time promoting their rights as citizens. Such contradictions create dilemmas for practitioners who may be unsure about what is the ethical or lawful approach in obtaining consent; sharing information; using potentially intrusive technology albeit for benign intent; or undertaking research with people with profound disabilities, whose needs we are least well informed about. This makes it highly unlikely, particularly in the present risk-averse climate of service organisations, that there will be any enthusiasm for taking the additional risk of sharing information across professional and agency boundaries. These ambiguities could be reduced if there were a much stronger commitment to share information with the vulnerable person and the data collected were clearly restricted to ensuring the well-being of that individual.

Keywords: learning disabled; privacy; personal data; citizen's rights; information sharing

Chapter.  6494 words. 

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