People can, and some do, buy direct-to-consumer genetic tests via the Internet- no health professional needed. Early adopters hope their sequence can tell them something about their risk for disease or about their ancestral background.
As the plummeting cost of DNA sequencing promises to facilitate medical care, researchers will sequence thousands of people's genomes over the coming years and use that information for research and patient care. In the process of learning to use all this information, they will confront a host of ethical, legal and social issues. For example, a person may want to know about his or her risk for cancer, but they may not want to know their genetic risk for Alzheimer's disease since that knowledge does not substantively inform clinical care at the present time. Moreover, when an individual learns his or her genetic information it is relevant not just to them, but potentially to the whole family.
"Genomic information will challenge all of us as individuals and as a society as we seek to understand what it means for ourselves, for our families and for our global cultures," said Eric D. Green, M.D., Ph.D., director of the National Human Genome Research Institute (NHGRI) "NHGRI is more committed than ever to funding research that studies the issues stemming from the knowledge and use of genomic information and its relevance to everyone, from individuals, to families and communities, to society at large."
The NHGRI Ethical, Legal and Social Implications (ELSI) research program has re-focused its research priorities to stay in step with genomic advances. The program is now aligned with NHGRI's new strategic plan for the future of genomics published in the Feb. 10, 2011, issue of Nature entitled Charting a Course for Genomic Medicine from Base Pairs to Bedside. To address the most pressing ELSI issues, NHGRI has issued three new program announcements to support studies in the following four research areas:
A more detailed discussion of each of these areas and a list of possible research topics is provided in the program announcements and is also available on the ELSI program webpage at www.gneome.gov/ELSI.
"NHGRI consulted and received input from both the scientific and ELSI community to develop the priorities reflected in the new program announcements," said Joy Boyer, a senior program analyst in NHGRI's ELSI research program. "Our program must remain flexible to support ELSI studies that can inform the development of sound research, health, and public policies so that we can all realize the greatest benefit from the information that exists in each of our genomes."
In addition to the NHGRI, several other institutes at the National Institutes of Health are participating in the new ELSI program announcements and have indicated an interest in funding grant applications that address ELSI issues that are relevant to their mission.
These institutes include the National Institute on Aging; The Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Institute on Deafness and Other Communication Disorders; the National Institute of Environmental Health Sciences; and the National Institute of Neurological Disorders and Stroke.
Last Reviewed: May 10, 2012