Search Results
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… use of data and samples (see Confidentiality (including privacy and identifiability) , and Data and Sample Sharing … and may sometimes be upsetting to participants.  Privacy breaches due to possible re-identification or other … form. For specific discussion regarding protection from privacy risks, see the section on Confidentiality (including …
Clinical Research
The goal of this study is to learn more about the genetic contributions to the severity of disease of COVID-19.
… of up to $70 for completing these study activities. Privacy and confidentiality are very important to us. We … other NIH study. We will take special steps to ensure your privacy and confidentiality if you decide to take part in the … we have in place to protect your confidentiality and privacy. Giving your sample and information a code number, …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… balance the expectation to share data with participant privacy considerations . Though the expectation is for … to ensure protection of research participants, maintain privacy, and mitigate risk, especially for vulnerable or … data that are challenging to de-identify or still pose privacy risks even when data are de-identified due to the …
Policies and Guidance
NHGRI encourages you to share your thoughts on the topics explored on genome.gov and other websites we own or administer.
… do not intend. Additional guidance as to how NHGRI regards privacy issues can be found at our Privacy Policy . We welcome your comments at any time. …
Policy Issues
Hay leyes y polÃticas que sirven para proteger la privacidad de la información genómica de un individuo.
Healthcare Provider Genomics Education Resource
Genomics plays a role in every area of nursing, whether nurses are at the bedside providing one-on-one care, treating entire populations, teaching the next generation of nurses, or making discoveries in the lab.
… planning and carrying out care.  Protection of rights of privacy and confidentiality: Privacy is the right to control access to and disclosure or … MI: International Society of Nurses in Genetics; 2018. Privacy and Confidentiality of Genetic Information: The Role …
News Release
Knowing your family health history can aid in detecting unique disease risks and lead to better prevention and treatment.
… The Reddit community also wanted to know how to handle privacy in patient data in order to understand how to interpret family health history. From adenovato: What privacy hurdles must you overcome to effectively model and … From Koehly_Lab : This is a great question because privacy issues are an overarching hurdle when communicating …
News Release
Researchers build a statistical model using family health history to improve disease risk assessment
Researchers at the National Human Genome Research Institute (NHGRI) have developed a new statistical model that can predict the risk for developing diseases by combining information about family member health and lifestyle factors from family members.
… of these results, Dr. Marcum responded, “There are privacy concerns that are embodied in current laws regarding … that are family-centric and also work with the medical privacy provisions set up by the Health Insurance Portability …
Policy Issues
Most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller.
… that a business made false or misleading claims about its privacy or data security procedures or failed to employ … Tests Consumer Education, DNA test kits: Consider the privacy implications  To help genetic testing companies …
Research Funding
The following are research areas of interest that have been identified by the participating NIH institutes and centers (ICs). Program Officer contact information is also included.
… participant preferences, informed consent, governance, privacy and security, and data sharing); this includes … such as the inability to have an open future, genetic privacy, and insurance or job discrimination. Use of residual … in research on potential stigmas, discriminations, and privacy concerns associated with either identification of …