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Multicenter Study
, 5 (3), 17-30

Returning Individual Research Results: Development of a Cancer Genetics Education and Risk Communication Protocol

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Multicenter Study

Returning Individual Research Results: Development of a Cancer Genetics Education and Risk Communication Protocol

J Scott Roberts et al. J Empir Res Hum Res Ethics.

Abstract

The obligations of researchers to disclose clinically and/or personally significant individual research results are highly debated, but few empirical studies have addressed this topic. We describe the development of a protocol for returning research results to participants at one site of a multicenter study of the genetic epidemiology of melanoma. Protocol development involved numerous challenges: (1) deciding whether genotype results merited disclosure; (2) achieving an appropriate format for communicating results; (3) developing education materials; (4) deciding whether to retest samples for additional laboratory validation; (5) identifying and notifying selected participants; and (6) assessing the impact of disclosure. Our experience suggests potential obstacles depending on researcher resources and the design of the parent study, but offers a process by which researchers can responsibly return individual study results and evaluate the impact of disclosure.

Figures

Fig. 1
Fig. 1
Study Flowchart.
Fig. 2
Fig. 2
Sample Risk Communication Tool Used in Educational Materials.

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