Handling of Secondary Genetic Findings in Research Examined

FRIDAY, Aug. 13, 2021 (HealthDay News) — Nearly half of research participants who say they do not want to receive secondary genetic findings about themselves change their minds after they receive more detailed information, according to a study published online July 29 in Genetics in Medicine.

Will Schupmann, from the U.S. National Institutes of Health in Bethesda, Maryland, and colleagues surveyed research participants to better understand their decisions to accept or refuse secondary genetic findings. The analysis included 148 participants who accepted and 83 who refused secondary findings, all of whom were given more detailed information about the types of secondary findings genetic researchers could return and were given an opportunity to revise their original decision.

The researchers found that 41 of 83 initial refusers (49.4 percent) opted to receive secondary genetic findings following the informational intervention. Three-quarters of the “reversible refusers” thought they had originally accepted secondary genetic findings. Half of initial refusers who continued to refuse (50.6 percent) showed high levels of understanding of which secondary findings would be returned postintervention, with concerns about becoming worried or sad being the most prominent reason cited (43.8 percent).

“This study demonstrates the need for a more robust informed consent process when soliciting research participants’ preferences about receiving secondary genetic findings,” the authors write.

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