Adolescent Perspectives on the Return of Individual Results in Genomic Addiction Research

Overview

Journal Psychiatr Genet

Specialty Neurology

Date 2015 Mar 10

PMID 25748091

Citations 7

Authors

Marilyn E Coors

Kristen M Raymond

Shannon K McWilliams

Christian J Hopfer

Susan K Mikulich-Gilbertson

Affiliations

Soon will be listed here.

Abstract

This study surveyed all adolescents who were enrolled in behavioral genomic research and provided DNA to a biobank, including 320 patients undergoing treatment for substance and conduct problems (SCPs) and 109 non-SCP controls. Participants selected from three options on the return of individual genomic results (RIR) and rated eight methods of re-contact. Most individuals with SCPs (77.8%) and non-SCP controls (72.5%) wanted RIR involving health or behavioral implications. The majority of individuals with SCPs (67.2%) and non-SCP controls (69.7%) indicated that phone re-contact was 'best', with e-mail (22.5% SCPs, 33.9% non-SCPs) and social networking websites (21.3% SCPs, 20.2% non-SCPs) being viable options. These results suggest a layered approach for RIR: phone calls, followed by e-mails and a secure message to a social networking account. Data from this special and vulnerable population, which includes youth involved in the criminal justice system and substantial minority participation, bring an essential and missing perspective to the discussion of RIR.

Citing Articles

Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Vears D, Minion J, Roberts S, Cummings J, Machirori M, Blell M PLoS One. 2021; 16(11):e0258646.

PMID: 34748551 PMC: 8575249. DOI: 10.1371/journal.pone.0258646.

Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.

Ralefala D, Kasule M, Matshabane O, Wonkam A, Matshaba M, de Vries J J Empir Res Hum Res Ethics. 2021; 16(5):525-536.

PMID: 34662218 PMC: 8642165. DOI: 10.1177/15562646211043985.

Return of individual research results: What do participants prefer and expect?.

Sayeed S, Califf R, Green R, Wong C, Mahaffey K, Gambhir S PLoS One. 2021; 16(7):e0254153.

PMID: 34324495 PMC: 8320928. DOI: 10.1371/journal.pone.0254153.

Views on genomic research result delivery methods and informed consent: a review.

Vears D, Minion J, Roberts S, Cummings J, Machirori M, Murtagh M Per Med. 2021; 18(3):295-310.

PMID: 33822658 PMC: 8242984. DOI: 10.2217/pme-2020-0139.

Do solidarity and reciprocity obligations compel African researchers to feedback individual genetic results in genomics research?.

Ralefala D, Kasule M, Wonkam A, Matshaba M, de Vries J BMC Med Ethics. 2020; 21(1):112.

PMID: 33148222 PMC: 7640670. DOI: 10.1186/s12910-020-00549-4.

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