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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 … local laws, biobanks and data repositories, or irbs. the informed consent process in most genomics research, as with …
Policy Issues
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. … these consent forms were used in …
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 … about their contribution to any research activities." informed consent is the basic and primary tool through which …
Policy Issues
Per the NIH GDS Policy, informed consent documents for prospective data collection after January 25, 2015 should state what data types will be shared, for what purposes and whether sharing will occur through open or controlled access databases.
… per the nih gds policy, informed consent documents for prospective data collection for studies … plan).  … information that nih expects to be conveyed in informed consent documents are defined in the  nih guidance …
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 …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… expectations. … in early 2020, nhgri will require explicit consent for future research use and broad data sharing of all … who need to use human samples that lack explicit consent may submit an exception request with a brief … not affect the sharing or use of these data.  … explicit consent:  explicit consent is a clear, affirmative response …
Policy Issues
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 …
Policy Issues
The GINA, is an important U.S. civil rights law that protects individuals from discrimination based on their genetic information.
… disclosing genetic information without an individual's consent . it is notable that this first version of the bill …
The Genomics Landscape
In the December 3, 2020 edition of The Genomics Landscape, Dr. Eric Green spotlights on ELSIhub.
… utility of generated data while maintaining privacy and consent . in an effort to improve data sharing in biomedical …
Staff
Dr. Sara Chandros Hull is the director of NHGRI's Bioethics Core.
… projects focus on secondary genomic research findings, informed consent and datasharing for research for genomic research, … lines from previously collected research biospecimens and informed consent. points to consider. stem cells transl med …