Search Results
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… This webpage discusses basic elements of informed consent that are required by the Common Rule (45 CFR 46, … This Research Study Being Done? [Examples:] We are asking for your permission to collect samples and health information …
News Release
An online Informed Consent Resource created in 2009 by NHGRI has been updated to keep pace with advances in genomics over the past several years
… important role must be thoughtfully considered and fully informed," said Laura Lyman Rodriguez, Ph.D., director of the … their contribution to any research activities." Informed consent is the basic and primary tool through which … policy landscape have contributed to new considerations for consent in genomic research," said Kate Saylor, health …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… This webpage discusses genomics-relevant considerations for informed consent and provides guidance on how to approach them. It …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… as samples and health-related information, are critical for the success of most human scientific research. … reproductive decision-making.  In designing an effective informed consent process for genomics research, researchers should …
Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… The Big Picture  The informed consent process ensures that research participants can make … researchers consider when obtaining informed consent for genomics research? In what ways can researchers obtain …
The Informed Consent Resource
Examples consent forms used by genomics research projects.
… These consent forms were used in various NIH-funded research … Network Consent and Community Consultation Workgroup Informed Consent Task Force   NA Exome or Genome Sequencing … NA Organ and Tissue Donation Authorization Authorization for Tissue Donation in National Institutes of Health Research …
News Release
NHGRI researchers asked patients, parents and physicians in the sickle cell disease community (SCD) what they wanted and needed to know about genome editing to make informed decisions about participating in genome-editing clinical trials.
… families and the scientific community to improve the informed consent process. … As public interest and expanded research … treatments, which appear to provide a potential for sickle cell, are among the most widely publicized medical …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… The Big Picture:  Informed consent is crucial in research as it ensures individuals have … a research study.  In the United States, the requirements for obtaining informed consent from research participants are …
News Release
Four NIH grants will support research on the ethical, legal and social questions raised by genomics research advances and genomic information.
… grants from the National Institutes of Health will support research on the ethical, legal and social questions raised by advances in genomics research and the increasing availability of genomic … research projects: Ethical, Legal and Social Issues for Precision Medicine and Infectious Disease Gail Geller, …
News Release
NIH will support research that incorporates DNA sequence information into electronic medical records.
… awards from the National Institutes of Health will support research that incorporates DNA sequence information into … research conducted by the Electronic Medical Records and Genomics (eMERGE) network is to better understand the genomic … effects," said Rongling Li, M.D., Ph.D., program director for eMERGE in the Division of Genomic Medicine at NHGRI, a …