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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, … sample language that can be used as a guide when crafting informed consent forms. … Regulations require  "a statement …
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 … about their contribution to any research activities." Informed consent is the basic and primary tool through which …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… reproductive decision-making.   In designing an effective informed consent process for genomics research, researchers should … repositories, or Institutional Review Boards (IRBs). The informed consent process should be a dynamic interaction …
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 … about whether to take part in a research study.   Informed consent must be accessible and understandable to the …
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 … and benefits of participating in a research project. … The informed consent process and consent form should reflect the …
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 … genetic variation Open Access Data NA GTEx, Live Donor Informed Consent Template Building a comprehensive public …
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 … the risks. This makes properly understanding informed consent, the full knowledge of risks and benefits of …
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 an informed choice about whether to participate in a research …
Educational Resources
The Genetic Information Nondiscrimination Act (GINA) is federal legislation that makes it unlawful to discriminate against individuals on the basis of their genetic profiles in regard to health insurance and employment.
For Patients and Families
List of resources to help you find accurate and reliable information on genetic and rare diseases. ​