title: Informed consent in the context of pharmacogenomic research: ethical considerations.
abstract: Although the scientific research surrounding pharmacogenomics (PGx) has been relatively plentiful, the ethical research concerning this discipline has developed rather conservatively. Following investigation of the ethical, legal and social issues (ELSI) of PGx research, as well as consulting with key stakeholders, we identified six outstanding ethical issues raised by the informed consent process in PGx research: (1) scope of consent; (2) consent to 'add-on' studies; (3) protection of personal information; (4) commercialization; (5) data sharing; and (6) potential risks stemming from population-based research. In discussing these six areas as well as offering specific considerations, this article offers a solid base from which future practical guidelines for informed consent in PGx research can be constructed. As such, this effort works toward filling the ELSI gap and provides ethical support to the numerous PGx projects undertaken by researchers every year.
authors: Centre for Biomedical Ethics and Law, KULeuven, Leuven, Belgium. heidi.howard@med.kuleuven.be
authors: H C
authors: HC
authors: Howard
authors: Y
authors: Y
authors: Joly
authors: D
authors: D
authors: Avard
authors: N
authors: N
authors: Laplante
authors: M
authors: M
authors: Phillips
authors: J C
authors: JC
authors: Tardif
mesh_terms: D035843:Biomedical Research / Q000941:ethics*; D003219:Confidentiality / Q000941:ethics; D006801:Humans; D033181:Information Dissemination / Q000941:ethics; D007258:Informed Consent / Q000941:ethics* / Q000331:legislation & jurisprudence; D010597:Pharmacogenetics / Q000191:economics / Q000941:ethics* / Q000331:legislation & jurisprudence