title: Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice.
abstract: Advances in genomics have led to calls for developing population-based preventive genomic sequencing (PGS) programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the sequencing or analysis of specific genomic conditions (the menu approach) or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations.
authors.affiliation: a University of North Carolina School of Medicine.
authors.forename: Gabriel
authors.initials: G
authors.lastname: Lázaro-Muñoz
authors.forename: John M
authors.initials: JM
authors.lastname: Conley
authors.forename: Arlene M
authors.initials: AM
authors.lastname: Davis
authors.forename: Marcia
authors.initials: M
authors.lastname: Van Riper
authors.forename: Rebecca L
authors.initials: RL
authors.lastname: Walker
authors.forename: Eric T
authors.initials: ET
authors.lastname: Juengst
mesh_terms: D002755:Choice Behavior / Q000941:ethics*; D030342:Genetic Diseases, Inborn / Q000235:genetics / Q000517:prevention & control*; D020022:Genetic Predisposition to Disease / Q000235:genetics; D030661:Genetic Privacy / Q000941:ethics; D005820:Genetic Testing / Q000191:economics / Q000941:ethics / Q000379:methods; D023281:Genomics / Q000941:ethics; D006801:Humans; D056186:Metagenomics / Q000941:ethics* / Q000331:legislation & jurisprudence; D026706:Paternalism; D026684:Personal Autonomy; D011322:Primary Prevention / Q000941:ethics / Q000379:methods; D011634:Public Health / Q000941:ethics / Q000639:trends; D017422:Sequence Analysis, DNA / Q000191:economics / Q000941:ethics
keywords: decision making; genetics (clinical); informed consent; law; medical humanities; public health