Informed Consent
Informed Consent in the Age of Next Generation Sequencing - July 27, 2015
Preliminary guidance related to informed consent for research on dried blood spots obtained through newborn screening,
NIH, July 2015
NIH, July 2015Experiences with obtaining informed consent for genomic sequencing.
Bernhardt BA et al. Am. J. Med. Genet. A 2015 Jul 21.
Bernhardt BA et al. Am. J. Med. Genet. A 2015 Jul 21.
Drifting away from informed consent in the era of personalized medicine.
Parens E et al. Hastings Cent Rep 2015 Jul (4) 16-20
Parens E et al. Hastings Cent Rep 2015 Jul (4) 16-20
Parental consent for the use of residual newborn screening bloodspots: respecting individual liberty vs ensuring public health.
Bayefsky MJ et al. JAMA 2015 Jul 7. (1) 21-2
Bayefsky MJ et al. JAMA 2015 Jul 7. (1) 21-2
"Not tied up neatly with a bow": Professionals' challenging cases in informed consent for genomic sequencing.
Tomlinson AN et al. J Genet Couns 2015 Apr 26.
Tomlinson AN et al. J Genet Couns 2015 Apr 26.
Overcoming challenges to meaningful informed consent for whole genome sequencing in pediatric cancer research.
Oberg JA et al. Pediatr Blood Cancer 2015 Aug (8) 1374-80
Oberg JA et al. Pediatr Blood Cancer 2015 Aug (8) 1374-80
Informed consent and health literacy: Workshop summary, Institute of Medicine Workshop Report, March 16, 2015
Institute of Medicine Workshop Report, March 16, 2015Enduring and emerging challenges of informed consent.
Grady Christine et al. N. Engl. J. Med. 2015 Feb 26. (9) 855-62
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
by Raymond MacDougall, Feb 4Next-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.
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.
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.
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.
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
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:
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.
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
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
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
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