ELSI and the KP Research Bank
In the context of genomics research, ELSI stands for “ethical, legal, and social implications.” The scientists who created the Human Genome Project over 30 years ago realized that the complete human genome sequence would raise many ethical, legal, and social issues.
In 1990, the ELSI Research Program was started at the National Institutes of Health as a key part of the Human Genome Project. The program’s goal is to ensure that genomic research is conducted ethically.
From the very beginning of the KP Research Bank, consideration of ELSI issues have been key to how the Research Bank operates. These issues have included how KP members are invited to participate in the Research Bank, how they agree to participate, and which scientific projects are given permission to use Research Bank data and/or samples.
In this issue of the newsletter, we’re featuring articles about the background of ELSI and the KP Research Bank; an interview with Chuck McAvoy, one of the original members of our Community Advisory Board and Access and Review Committee; and highlights from recently approved KP Research Bank projects.
Thank you for your continued interest in the Research Bank. My colleagues and I wish you a happy new year.
Devin Absher, PhD
Kaiser Permanente Research