Search Results
Facet (Page)
Refine Your Search
Audiences
Content Formats
File
… Privacy Protections for Biomedical Research Participants …
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. …
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 …
Policy Issues
Hay leyes y polÃticas que sirven para proteger la privacidad de la información genómica de un individuo.
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 …