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Type: Journal article
Title: What's in a name? Searching the web for information about ethically contentious and emerging healthcare technologies
Author: Axler, R.
Strong, K.
Jordens, C.
Ankeny, R.
Barlow-Stewart, K.
Kerridge, I.
Citation: Journal of Communication in Healthcare, 2009; 2(2):173-183
Publisher: Maney Publishing
Issue Date: 2009
ISSN: 1753-8068
Statement of
Renata E. Axler, Kimberly A. Strong, Christopher F. C. Jordens, Rachel A. Ankeny, Kristine Barlow-Stewart and Ian H. Kerridge
Abstract: This study examined the problems faced by lay people searching the web for information about emerging and ethically contentious technologies, by simulating a web search for information about creating a matched sibling donor for a bone marrow transplant (sometimes termed a ‘saviour sibling’). Five search terms related to the use of this technology were inserted into the top four search engines using well-recognised search strategies. The first page of results in each of the search engines was analysed. The study found little information available online about the creation of a ‘saviour sibling’. The nature of the information clearly depended on the choice of search term and varied significantly in terms of its scientific content, consumer guidance and value bias. Complete and comprehensive information about this means of securing a transplant donor cannot be accessed via a typical web search. In addition to providing information about creation of a ‘saviour sibling’, clinicians should also provide a description of the adequacy and limitations of web resources on this topic and guidance as to appropriate information-seeking strategies.
Keywords: saviour sibling, preimplantation genetic diagnosis, HLA tissue typing, web search, sibling transplant, doctor/patient communication, decision-making
Rights: Copyright of Journal of Communication in Healthcare is the property of Henry Stewart Publications LLP
DOI: 10.1179/cih.2009.2.2.173
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