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.
References
Jun 19, 2007·Community Genetics·Béatrice GodardClaude Laberge
May 16, 2008·PLoS Medicine·David I Shalowitz, Franklin G Miller
Dec 9, 2008·The American Journal of Bioethics : AJOB·Juli MurphyKathy Hudson
Jul 17, 2009·Genetics in Medicine : Official Journal of the American College of Medical Genetics·James P Evans, Robert C Green
Mar 18, 2010·European Journal of Human Genetics : EJHG·Fiona Alice MillerJessica Peace Bytautas
Mar 25, 2010·BMC Medical Ethics·Nola M RiesTimothy Caulfield
Sep 14, 2010·Journal of Empirical Research on Human Research Ethics : JERHRE·J Scott RobertsStephen B Gruber
May 11, 2011·Public Health Genomics·J O'Daniel, S B Haga
Nov 17, 2011·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Denise AvardDaniel Sinnett
Feb 7, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Leslie G Biesecker
Mar 19, 2013·BMC Medical Genomics·Zubin MasterTimothy Caulfield
Apr 11, 2013·Pharmacogenomics·Sandra KorolSimon de Denus
May 4, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Rachel B RamoniSteven Joffe
Jun 4, 2013·The International Journal of Neuropsychopharmacology·Ghislaine MathieuBeatrice Godard
Jun 22, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Robert C GreenUNKNOWN American College of Medical Genetics and Genomics
May 23, 2014·American Journal of Medical Genetics. Part a·Joon-Ho YuHolly K Tabor
Jun 20, 2014·Mayo Clinic Proceedings·Nicole L AllenLisa Soleymani Lehmann
Jul 22, 2014·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Lisa EcksteinBenjamin E Berkman
Citations
Mar 18, 2017·Genetic Testing and Molecular Biomarkers·Bernice S Elger, Eva De Clercq
Nov 6, 2020·BMC Medical Ethics·Dimpho RalefalaJantina de Vries
Apr 7, 2021·Personalized Medicine·Danya F VearsMadeleine J Murtagh
Jul 30, 2021·PloS One·Sabina SayeedUNKNOWN Project Baseline Health Study Research Group
Nov 9, 2021·PloS One·Danya F VearsMadeleine J Murtagh