Dataset Information

Impact of Receiving Secondary Results from Genomic Research: A 12-Month Longitudinal Study.

ABSTRACT: The impact of returning secondary results from exome sequencing (ES) on patients/participants is important to understand as ES is increasingly utilized in clinical care and research. Participants were recruited from studies using ES and were separated into two arms: 107 who had ES and were offered the choice to learn secondary results (ES group) and 85 who had not yet had ES (No ES group). Questionnaires were administered at baseline and 1 and 12 months, following results disclosure (ES group) or enrollment (No ES group). While the majority (65%) elected to learn all results following pre-test counseling, it was reduced from the 76% who indicated a desire for all results at baseline. Thirty-seven percent received results associated with an increased personal disease risk. There were no differences in changes in any of the psychological and social measures from baseline to post-results disclosure between the ES and No ES groups. Receiving a wide range of secondary findings appeared to have little measurable impact on most participants. The experience of learning secondary results may be related to participants' previous experiences with genetics, as well as the genetic counseling provided. Future research with a more diverse, genetically naïve group, as well as scalable methods of delivery, is needed.

SUBMITTER: Wynn J

PROVIDER: S-EPMC5945295 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Impact of Receiving Secondary Results from Genomic Research: A 12-Month Longitudinal Study.

Wynn Julia J Martinez Josue J Bulafka Jessica J Duong Jimmy J Zhang Yuan Y Chiuzan Codruta C Preti Jain J Cremona Maria L ML Jobanputra Vaidehi V Fyer Abby J AJ Klitzman Robert L RL Appelbaum Paul S PS Chung Wendy K WK

Journal of genetic counseling 20171122 3

The impact of returning secondary results from exome sequencing (ES) on patients/participants is important to understand as ES is increasingly utilized in clinical care and research. Participants were recruited from studies using ES and were separated into two arms: 107 who had ES and were offered the choice to learn secondary results (ES group) and 85 who had not yet had ES (No ES group). Questionnaires were administered at baseline and 1 and 12 months, following results disclosure (ES group) o ...[more]

PMID: 29168042

Similar Datasets

Project description:Trajectories of internalizing disorders and behavioral addictions are still largely unknown. Research shows that both disorders are highly comorbid. Previous longitudinal studies have focused on associations between internalizing disorders and behavioral addictions using screening instruments. Our aim was to develop and examine a theory-based model of trajectories, according to which internalizing disorders foster symptoms of Internet use disorders, mediated by a reward deprivation and maladaptive emotion regulation. We applied clinically relevant measures for depression and social anxiety in a prospective longitudinal study with a 12-month follow-up investigation. On the basis of an at-risk population of 476 students (mean age = 14.99 years, SD = 1.99), we investigated the predictive influence of clinically relevant depression and social anxiety at baseline (t1) on Internet use disorder symptoms at 12-month follow-up (t2) using multiple linear regression analyses. Our results showed that both clinically relevant depression and social anxiety significantly predicted symptom severity of Internet use disorders one year later after controlling for baseline symptoms of Internet use disorders, gender and age. These results remained robust after including both depression and social anxiety simultaneously in the model, indicating an independent influence of both predictors on Internet use disorder symptoms. The present study enhances knowledge going beyond a mere association between internalizing disorders and Internet use disorders. To our knowledge, this is the first study investigating clinically relevant depression and social anxiety to predict future Internet use disorder symptoms at 12-month follow-up. In line with our model of trajectories, a significant temporal relationship between clinically relevant internalizing disorders and Internet use disorder symptoms at 12-month follow-up was confirmed. Further studies should investigate the mediating role of reward deprivation and maladaptive emotion regulation, as postulated in our model. One implication of these findings is that clinicians should pay particular attention to the increased risk of developing behavioral addictions for adolescents with depression and social anxiety.

Dataset Information

Impact of Receiving Secondary Results from Genomic Research: A 12-Month Longitudinal Study.

Publications

Impact of Receiving Secondary Results from Genomic Research: A 12-Month Longitudinal Study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets