Guidance for patients considering direct-to-consumer genetic testing and health professionals involved in their care: development of a practical decision tool

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Abstract

Background.

Direct-to-consumer (DTC) genetic tests are available online, but there is little practical guidance for health professionals and consumers concerning their use. Work to produce such guidance was initially informed by three systematic reviews assessing the evidence on views and experiences of users and health professionals and policies of professional and bioethics organizations. The evidence suggested that consumers’ motivations include general curiosity, improving their general health, ascertaining the risk of a particular condition or planning for future children. However, health professionals and bioethics organizations expressed concerns about potential harms resulting from these tests. Using this evidence, we constructed a list of topics to be included in proposed guidelines.

Methods.

Using an expert group technique, we aimed to develop guidance for (i) potential consumers and (ii) health professionals approached by patients considering or having undertaken such tests. We considered it important to involve a wide range of participants with relevant experience. Accordingly, researchers and clinicians based in four countries were invited to a 2-day workshop in August 2012. Following an iterative process, we decided to produce clinically relevant and pragmatic guidance in the form of a decision support tool for use in primary care.

Results.

By utilizing both the relevant literature and the experience of the expert group, we identified seven key underlying reasons that might prompt individuals to consider DTC testing. We considered primary care physicians as the most likely health professionals from whom individuals would seek advice.

Conclusions.

Based on the outcomes of the workshop, we developed a decision support tool encompassing varied clinical scenarios. Health professionals and patients are guided through a pathway that includes relevant actions and information on the appropriateness of the test. This tool will be freely accessible to health professionals and patients online.

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