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Private and confidential?Handling personal information in the social and health services$
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Chris Clark and Janice McGhee

Print publication date: 2008

Print ISBN-13: 9781861349064

Published to Policy Press Scholarship Online: March 2012

DOI: 10.1332/policypress/9781861349064.001.0001

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Working with adults with incapacity

Working with adults with incapacity

(p.191) ten Working with adults with incapacity
Private and confidential?

Susan Hunter

Lisa Curtice

Policy Press

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

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