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Fact Sheet
Informed consent is more than a form; it’s a process. What does it involve?
… and consent form, researchers should use appropriate language, videos or other educational materials that fall … written materials should strive to use simple but accurate language that describes the concepts. The amount of time …
File
… Sample Consent Document 4b (Spanish language version): Incorporación de la secuenciación genómica … Página 15 de 15 … Sample Consent Document 4b (Spanish language version) …
Event
NHGRI and the University at Buffalo Center for Disability Studies will hold a two-day symposium on October 6-7, 2022 to address historical constructions of disability and ableism, with a focus on the “irreducibility” of individuals with disability and the history of disability.
… Speakers will consider how scientific program funding language — and NIH communications — can better address the …
Genetic Disorders
Cri du chat syndrome is a rare genetic condition that is caused by the deletion of genetic material on the the p arm of chromosome 5.
… who have cri du chat syndrome have difficulty with language. Half of children learn sufficient verbal skills to … themselves with a few basic words, gestures, or sign language. Other characteristics may include feeding … educational intervention, as well as physical and language therapy, children with cri du chat syndrome are …
News Release
NIH-backed African scientists are engaged in a global research endeavor to understand the genetic basis of disease in all populations.
… the path forward has not been without itschallenges. Language barriers, consent concerns Language, culture and the education level of study subjects …
Secondary Genomics Findings Service
Responsibilities as a PI, consent, type of data accepted, and how to apply
… … The SGFS requires that protocols include appropriate language for the evaluation and return of secondary findings. … at a later time. We have provided some suggested language to incorporate into protocols and consent forms. As …
Policies and Guidance
NHGRI ensures that our website is in compliance with Section 508 of the Rehabilitation Act (29 U.S.C. 794d).
… need more information about available resources in your language or in another language, please contact us . … Policy … Notice to Limited …
Event
On November 5-9, 2024, the National Human Genome Research Institute (NHGRI) will participate in the ASHG Annual Meeting - the world's largest human genetics and genomics meeting and exposition. The annual meeting provides a forum for the presentation and discussion of cutting-edge science in all areas of human genetics.
… skeletal dysplasia 2010T Kendall Flaharty Evaluating Large Language Models on Medical, Lay Language, and Self-Reported Descriptions of Genetic …
The Genomics Landscape
In the April 7, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., highlights the Telomere-to-Telomere (T2T) consortium's publishing of a collection of papers that reported the first truly complete sequence of the human genome.
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… other special circumstances of the participants, including language, literacy and attitudes about consent and research … in 2010 and continuously maintained, provides sample language for informed consent forms and additional …