Informed consent is the basic and primary tool through which investigators communicate with each potential study participant and is vital to ensuring that the research purpose, any risks and possible benefits, or other implications of participation are understood. NHGRI's online Informed Consent Resource has helped thousands of researchers navigate the informed consent process since 2009. Now, the ICR has been updated to keep pace with advances in genomics over the past several years. Read more
The world owes much to Henrietta Lacks, the African-American woman whose cells were removed during a biopsy in 1951 and used for research without her knowledge or approval. Mrs. Lacks died at the age of 31, a few months after her diagnosis of cervical cancer. She would never know that more than six decades later, her cells would continue to grow and provide a foundation for advancements in biomedical research. Read more
The U.S. Food and Drug Administration (FDA) today announced steps it will take to ensure that certain tests used by health care professionals to diagnose and treat patients provide accurate, consistent and reliable results to inform patient care. These steps come at a critical time for genomic, or precision, medicine. As more and more genetic tests are developed and marketed, the public must be able to rely on the accuracy and clinical validity of these tests.
Read the FDA Release
Read a statement from NIH Director Francis Collins
Read the full summary of the workshop to discuss the potential implications on research policies of recommendations and guidelines regarding the management of incidental findings when patients undergo clinical exome or genome sequencing.
Last Updated: February 4, 2015