Clin Genet. 2012 Feb 28. doi: 10.1111/j.1399-0004.2012.01863.x. [Epub ahead of print]
Direct to Consumer Genetic Testing: a systematic review of position statements, policies and recommendations.
SourceFaculty of Health, Education and Society, Plymouth University, United Kingdom.
AbstractIn healthcare settings, genetic tests to determine whether an individual had inherited a genetic mutation are ordered by a health professional and the results interpreted and conveyed to the patient by that person. However, direct to consumer genetic testing has enabled individuals to purchase genetic tests and receive results without health professional intervention. To inform a set of guidelines for consumers and health professionals, we undertook a systematic review of position statements, policies and recommendations on the use of direct to consumer genetic testing. We performed a search of seven databases and the Internet for relevant documents. The search terms were 'direct to consumer' AND 'genetic test' and documents in English published from 2002 - 2011 were included. The search retrieved 314 items, of which 14 were eligible for review. Five themes were derived from thematic analysis: motivation for use, potential benefits, potential harms, recommendations to guide consumers and need for research. Document authors described more potential harms than benefits, but while some stated that direct to consumer testing should be actively discouraged, others supported consumer rights to make autonomous choices. Further research into the impact of direct to consumer testing on health services and consumers is required to inform policies.
© 2012 John Wiley & Sons A/S.
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