NIH www.nih.gov awarded four grants for $15 million involving genomics through the National Human Genomic Research Institute’s (NHGRI) www.genome.gov “Centers of Excellence in Ethical, Legal and Social Implications Research” (CEER) www.genome.gov/15014773/centers-of-excellence-in-elsi-research.
The research projects will examine the use of genomic information in the prevention and treatment of infectious diseases, genomic information privacy, prenatal and newborn genomic testing results, and the impact of genomics in American Indian and Alaskan Native communities.
One of the grants awarded for $4, 012,641 over four years went to Vanderbilt University School of Medicine http://medschool.vanderbilt.edu to establish the new center “Genetic Privacy and Identity in Community Settings”.
The Center will study privacy concerns associated with the use of genomic information. The researchers will study the lapses that occur in protecting genomic information so that people aren’t identified, how people perceive such risks, and how effective are the legal and policy efforts used to reduce the risks.
Johns Hopkins Berman Institute of Bioethics www.bioethicsinstitute.org and Johns Hopkins University www.jhu.edu will use $4, 155,172 to examine the ethical implications of using genomic information to help manage the prevention, control, and treatment of infectious diseases. The researchers will conduct three pilot projects to study how genomic information affects infectious disease research, public health policy, and clinical practice.
Researchers at the University of Utah Salt Lake City www.utah.edu are going to expand on prenatal testing studies already supported by NHGRI. A grant for $3,881,732 will enable the researchers to study how family members communicate about prenatal and newborn screening, including how test results and risks are communicated, decisions are made, and how couples communicate.
Researchers at the University of Oklahoma in Norman www.ou.edu are going to look at how the use of genomic information in medical care will potentially impact American Indian and Alaska Native communities in terms of their healthcare systems.
A grant for $3,611,308 will enable the university to partner with the Chickasaw and Lakota Sioux tribes and communities and the Southcentral Foundation in Alaska to study awareness, knowledge, and attitudes about genomics in these communities. The plan is to help create culturally appropriate research and education programs as well as tools to develop similar programs in other communities.