Search Results
Staff
Dr. Nicole Lockhart is a program director in NHGRI's Division of Genomics and Society.
… (NHGRI) in 2012 as a program director in the Division of Genomics and Society. Dr. Lockhart oversees a portfolio of research and career development grants related to the … (NCI). While at NCI, she focused on ethical, legal and policy issues related to biobanking. Her academic training is …
Policies and Guidance
Frequently Asked Questions regarding the NHGRI's Metadata and Phenotypic Data Sharing Expectations.
… Asked Questions Data sharing is an important aspect of the research endeavor that ensures maximal use of … the NIH definition of metadata provided in the Final NIH Policy for Data Management and Sharing : Metadata  are “data … such as study protocols, informed consent form templates, results report templates, methodologies used, and …
Policies and Guidance
Guidance describing NHGRI’s position on appropriate third-party involvement.
… and contract-recipients sometimes seek or receive offers of support from companies or other third parties (e.g., … investigators that are subject to the NIH Data Sharing Policy or the NIH Genomic Data Sharing (GDS) Policy , … support in exchange for receiving special access to study results, data, findings, or intellectual property. … NHGRI …
The Genomics Landscape
In the February 2024 issue of The Genomics Landscape, NHGRI Director Eric Green spotlights the Genome Statute and Legislation Database, which recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level legislation related to genomics.
… As February begins, many of us at NHGRI are working hard in preparation for the … recently received a major revamp to help researchers, policy analysts, and the public more easily find state-level … and the use of genetics in law enforcement. The search results provide a quick summary along with the current …
Policy Issues
Federally-funded research with human participants must comply with regulations that protect the rights and welfare of the participants.
… The use of human participants in biomedical, clinical and … funded by or carried out at NIH, is subject to the Federal Policy for the Protection of Human Research Subjects, or … a disease or will be affected themselves. These indirect results can pose an ethical conflict between a possible duty …
Policy Issues
The 9 steps a bill can go through before becoming a law, using the Genetic Information Non-Discrimination Act of 2003 as an example.
… a bill can go through before becoming a law. The history of the Genetic Information Nondiscrimination Act  (GINA), a law that was passed in 2008 and impacts the field of genomics, provides an excellent example of the legislative … Non-Discrimination Act of 2003 as an example. … Policy Issues …
Staff
Joy Boyer was a program director in NHGRI's Division of Genomics and Society.
… since 1996. As a program director in the NHGRI Division of Genomics and Society, Joy oversees a portfolio of research, training and career development grants related … Genomics and Society. … Joy Boyer, societal issues, social policy, ethical legal and social implications, newborn …
Policy Issues
In June 2013, the Supreme Court determined that DNA in its natural form cannot be patented.
… were issued in 1982, following the U.S. Supreme Court case of Diamond vs. Chakrabarty, which opened the door to … patenting biotechnology discoveries. Since then, the core of the debate over gene patents has been whether or not the … databases within 24 hours of being generated. This policy of open access to the genome has been a core ethos of …
Policy Issues
El uso de seres humanos en las investigaciones biomédicas, clÃnicas y socioconductuales puede ofrecer entendimiento y descubrimientos que no pudieran obtenerse de ninguna otra manera.
… en Investigaciones ( Federal Policy for the Protection of Human Research Subjects ) o 'Regla Común'. Esta regulación … de biomuestras (" Workshop on the Release of Research Results to Participants in Biospecimen Studies "). El … para formar el Consorcio de Entrega de Resultados ( Return of Results Consortium ). Los investigadores del …
Policy Issues
Participating in genomics research is an opportunity to support exploration of the genome and help scientists understand, prevent, detect and treat disease.
… is an opportunity to support scientific exploration of the genome and to help NIH in its mission to understand, … you or your family members. For example, genomic testing results could tell you information about disease risk, … understand, prevent, detect and treat disease. … Policy Issues …