Available on the American Society of Human Genetics' education resources is a CSER-developed Guide to Interpreting Genomic Reports, a just-in-time resource for non-geneticist physicians when receiving a genomic test report. This Toolkit's work was led by Sharon Plon from Baylor and Kelly East from HudsonAlpha, with support from the CSER Practitioner Education working group.
Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing.
While secondary findings are often of clinical significance, they also can reveal a wide range of health-related conditions where significance is unknown, or further screening or treatments may not exist, creating unintended negative psychological, social, and medical consequences. As experts work towards shaping a national policy, it is also important to take into consideration public viewpoints. To help inform national policy on the disclosure of secondary findings, we assessed the informed, well-considered views of the lay public through the development of a deliberative democracy (DD) session. A DD approach was preferred to more traditional survey methods by virtue of its ability to elicit better informed, more fully considered perspectives on management of secondary findings from WGS. Participants (n = 66) were educated about the scientific and ethical aspects of the disclosure of secondary findings by experts in medical genetics and bioethics, and then engaged in facilitated discussion of policy options for the disclosure of 3 types of secondary findings: 1) medically actionable results; 2) adult onset disorders found in children; and 3) carrier status. Participants' opinions were collected via surveys administered 1 month before, immediately following, and 1 month after the DD session. In general, participants’ preferences were for unrestricted access to all types of secondary findings. However, post DD session, participants were significantly more willing to support policies that do not allow access to secondary findings related to carrier screening (p = 0.003) or adult onset conditions in children (p = 0.001), with these changes in support maintained for the latter though the 1-month follow-up (p = 0.041). Our findings suggest that education and deliberation can enhance public appreciation of the scientific and ethical complexities of genome sequencing and promote greater acceptance of policies that regulate access to test results.
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