Susanne B Haga1, Rachel Mills1. 1. Center for Applied Genomics & Precision Medicine, Duke University, School of Medicine, 304 Research Drive, Box 90141, Durham, NC 27708, USA.
Abstract
AIM: We aimed to understand consent practices for pharmacogenetic (PGx) testing. METHODS: We conducted a literature review and analysis of consent forms from clinical laboratories offering PGx testing. RESULTS: Our review of the literature shows a lack of consensus about the need for and type of informed consent for PGx testing. We identified 35 companies offering PGx testing and were able to confirm consent practices for 22 of those. We found a range of variability in the consent practices regarding the consent approach and information disclosed. CONCLUSION: Variability in the consent practices among laboratories offering PGx testing mirrors the ambiguous practices and recommendations reported in the literature. Establishing a minimal set of information to be disclosed to patients may help address the disparities in consent practice.
AIM: We aimed to understand consent practices for pharmacogenetic (PGx) testing. METHODS: We conducted a literature review and analysis of consent forms from clinical laboratories offering PGx testing. RESULTS: Our review of the literature shows a lack of consensus about the need for and type of informed consent for PGx testing. We identified 35 companies offering PGx testing and were able to confirm consent practices for 22 of those. We found a range of variability in the consent practices regarding the consent approach and information disclosed. CONCLUSION: Variability in the consent practices among laboratories offering PGx testing mirrors the ambiguous practices and recommendations reported in the literature. Establishing a minimal set of information to be disclosed to patients may help address the disparities in consent practice.
Authors: Roxaneh Zarnegar; Matthew R D Brown; Matthew Henley; Victoria Tidman; Ahilan Pathmanathan Journal: J R Soc Med Date: 2015-10-02 Impact factor: 5.344
Authors: James M Hoffman; Cyrine E Haidar; Mark R Wilkinson; Kristine R Crews; Donald K Baker; Nancy M Kornegay; Wenjian Yang; Ching-Hon Pui; Ulrike M Reiss; Aditya H Gaur; Scott C Howard; William E Evans; Ulrich Broeckel; Mary V Relling Journal: Am J Med Genet C Semin Med Genet Date: 2014-03-11 Impact factor: 3.908
Authors: Barbara A Bernhardt; Myra I Roche; Denise L Perry; Sarah R Scollon; Ashley N Tomlinson; Debra Skinner Journal: Am J Med Genet A Date: 2015-07-21 Impact factor: 2.802
Authors: Seema M Jamal; Joon-Ho Yu; Jessica X Chong; Karin M Dent; Jessie H Conta; Holly K Tabor; Michael J Bamshad Journal: Am J Med Genet A Date: 2013-05 Impact factor: 2.802
Authors: Kristin Wiisanen Weitzel; Benjamin Q Duong; Meghan J Arwood; Aniwaa Owusu-Obeng; Noura S Abul-Husn; Barbara A Bernhardt; Brian Decker; Joshua C Denny; Eric Dietrich; John Gums; Ebony B Madden; Toni I Pollin; Rebekah Ryanne Wu; Susanne B Haga; Carol R Horowitz Journal: Pharmacogenomics Date: 2019-10 Impact factor: 2.533
Authors: Sylvia Nabukenya; Joseph Ochieng; David Kaawa-Mafigiri; Ian Munabi; Janet Nakigudde; Frederick Nelson Nakwagala; John Barugahare; Betty Kwagala; Charles Ibingira; Adelline Twimwijukye; Nelson Sewankambo; Erisa Sabakaki Mwaka Journal: Res Ethics Date: 2022-02-07
Authors: D Max Smith; Beth N Peshkin; T Blaise Springfield; Ryan P Brown; Elizabeth Hwang; Susanna Kmiecik; Richard Shapiro; Zayd Eldadah; Conor Lundergan; Joel McAlduff; Bonnie Levin; Sandra M Swain Journal: Clin Transl Sci Date: 2020-02-12 Impact factor: 4.689