NHGRI Funding for Genomic Research Ethics

Recently, the National Human Genome Research Institute (NHGRI) announced $416 million in funding for the Large-Scale Genome Sequencing Program. The program will emphasize uses of genome sequencing information, especially in clinical settings and for studying rare diseases. Part of the funding is dedicated to a discussion of the ethics of collecting, storing and using genomic information. These are significant discussions and the policies developed will have an impact on how readily people agree to participate in genomic research. One example is the informed consent process, which explains what will be done with the genetic information collected from each participant. In the early sequencing experiments, the genomic information was collected for one specific research aim but then as the genomes had already been sequenced, the information was used to answer a different research question at a later point. In some cases, the participants did not consent for their information to be used in different research. The most famous example is case of the Havasupai Indians, which objected to Arizona State University using their genomic information to study genetic variants that cause schizophrenia when the original question looked for genetic variants that caused diabetes. The Havasupai Indians sued Arizona State University. Scientific advances have significantly lowered the cost and time required to acquire and store genomic information and the abundance of sequence information might tempt some scientists to use the information for research questions not covered in the initial informed consent. However, lawsuits and loss of trust with the participants can be avoided if the genome sequencing community develops clear policies governing future use of genomic information.


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