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Policy Issues
Genetic information is used by law enforcement to investigate criminal acts and exonerate those who have been convicted of crimes they did not commit.
… with a discussion of their ramifications with respect to privacy. … The Combined DNA Index System (CODIS) is the … were troubled by the implications of the decision for privacy. Justice Antonin Scalia signaled deep disagreement by … 18 months of use. However, the technology raises some privacy concerns due to its broad use of genetic information …
Fact Sheet
Several regulations and policies stipulate the information that must be given to research participants prior to their enrolling in a study.
… did not provide consent before death. However, under the Privacy Rule a legally defined personal representative must … Information Portability and Accountability Act (HIPAA) Privacy Rule mandates that individuals or organizations who … HIPAA (including federal labs), but portions of the HIPAA Privacy Rule may still apply. Researchers should check with …
Fact Sheet
Genomic data science is a field of study that enables researchers to use powerful computational and statistical methods to decode the functional information hidden in DNA sequences.
… sequence data are associated with issues related to privacy and identity. … Infographic: How big is 40 exabytes? … sequence is associated with complex issues related to privacy and identity.  Informed Consent: Researchers … data in the process of gaining such informed consent.  Privacy: Powerful computational tools can take sequence data …
Policy Issues
Informed consent shows respect for personal autonomy and is an important ethical requirement in research.
… Be reinterpreted and change in relevance over time. Raise privacy concerns (in part because of the risk of … the study or after they are deceased. The risks (including privacy and psychosocial ) and potential benefits of … a person’s genome can have implications for identity and privacy, the informed consent process is an important …
Fact Sheet
Pharmacogenomics is a growing area of genomic medicine that uses a person’s genomic information to help healthcare providers select the medications and dosages that are predicted to work best in each patient.
… story from the NIH Clinical Center, omitting the name for privacy reasons.  “I am an African American woman in my 30s … and policy makers are looking to address issues related to privacy , equity and access. Like other aspects of genomic …
Educational Resources
NHGRI participates in the South By Southwest (SXSW) conference to help increase genomic literacy.
… to digitize, we have created measures to protect our cyber privacy and data. We know to delete phishing emails, we … create spaces for difficult classroom conversations about privacy, racism, ethics, and identity. Panelists: Belen …
News and Events
Discover the secrets hidden in your genome through illustrations, videos, engaging stories, and the latest science that impacts your life.
… do not intend. For additional guidance, please read our Privacy Policy . … NHGRI Office of Communications Social …
Events
Data sharing has been a central tenet of the field of genomics since the Human Genome Project.
… data is critical to scientific progress, considerable privacy and other concerns have been raised over sharing …
Event
On May 23, 2023, NHGRI will host a webinar: ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… Native Participant Data NIH Notice on Protecting Privacy while Sharing Nature’s Data Repository Guidance Protecting Participant Privacy when Sharing Scientific Data Registry of Research …
Policies and Guidance
Frequently Asked Questions regarding the Update to NIH Management of Genomic Summary Results Access.
… only available through controlled-access pathways. The privacy risks for individual-level data are greater than … there are some studies where there might be additional privacy concerns, such as those that include populations from … certain study populations may be more vulnerable to this privacy risk if they are from a small or isolated population …