Informed Consent in the Age of Next Generation Sequencing - March 16, 2015

Genomics|Features|Informed Consent

Informed Consent

Informed Consent in the Age of Next Generation Sequencing - March 16, 2015

Informed consent and health literacy: Workshop summary, Institute of Medicine Workshop Report, March 16, 2015

Enduring and emerging challenges of informed consent.
Grady Christine et al. N. Engl. J. Med. 2015 Feb 26. (9) 855-62

National Human Genome Research Institute: Informed consent resources for genomics research

NHGRI updates online resource on informed consent for genomics research, by Raymond MacDougall, Feb 4

Next-generation sequencing-based genome diagnostics across clinical genetics centers: implementation choices and their effects.
Vrijenhoek T, et al. Eur J Hum Genet. 2015 Jan 28.

The emerging need for family-centric initiatives for obtaining consent in personal genome research.
Minari J, et al. Genome Med. 2014 Dec 17;6(12):118.

NIH policy supports broader sharing of genomic data, strengthens informed-consent rules: Research participants must give consent for secondary sharing, even if data are de-identified.
Am J Med Genet A. 2015 Jan;167(1):viii-ix.

Researchers' views on informed consent for return of secondary results in genomic research.
Appelbaum PS, et al. Genet Med. 2014 Dec 11.

Genetic screening and testing in an episode-based payment model: preserving patient autonomy.
Sutherland S, et al. Obstet Gynecol. 2014 Nov;124(5):987-91

Testing an online, dynamic consent portal for large population biobank research.
Thiel DB, et al.  Public Health Genomics. 2015;18(1):26-39. doi:

Informed consent and ethical re-use of African genomic data.
Wright G, et al. Hum Genomics. 2014 Oct 22;8(1):18.

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients.
Scollon S, et al. Genome Med. 2014 Sep 17;6(9):69

The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.
Henderson Gail E et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2014 (3) 344-55