Abstract

In lieu of an abstract, here is a brief excerpt of the content:Bioethics Inside the BeltwayNHGRI’s Intramural Ethics ExperimentRonald M. Green (bio)Early in 1995, the National Human Genome Research Institute (then known as the National Center for Human Genome Research) began a novel experiment. It established the Office of Genome Ethics in its Division of Intramural Research (DIR). An extramural “ELSI” funding program for research on the ethical, legal, and social implications of the Human Genome Project had been in existence since 1990, and a joint Department of Energy, NIH Working Group to consider larger policy issues raised by the genome project had also been in existence since that date. But the establishment of the Office of Genome Ethics was the first effort to provide an in-house ethics service for the several hundred NHGRI genetic researchers working on the NIH campus.The experiment was also novel by NIH standards. The Clinical Center, which serves all NIH research institutes as a patient-care facility, has long had a bioethics program, but, to my knowledge, none of the 23 other institutes, centers, or divisions of the NIH had ever developed an ethics program to assist its on-campus researchers in identifying and addressing the ethical issues arising from their research. Behind this initiative lay the commitment to ethics in genetic research shared by Francis Collins, Director of NHGRI, Jeff Trent, Scientific Director of the Division of Intramural Research, and other senior scientists and administrators of the Institute.I was fortunate to be asked to serve as Director of this office. My previous experience in the federal context was limited. I had served on many NIH study sections and for a nine-month period had been a member of the Human Embryo Research Panel, but none of this amounted to an “insider’s view” of government bioethics. The preponderance of my bioethics career had transpired in the university and medical school/medical center environment.Because I had to continue to fulfill many Dartmouth commitments, I agreed to serve on an interim and half-time basis (one week in Bethesda; one week at home) for an 18-month period. I was assisted in maintaining this schedule by the appointment of a deputy, Mathew Thomas, a recent bioethics graduate of Duke University, who would serve on a full-time basis and provide continuity for our [End Page 181] work. Our objectives, established in consultation with NHGRI personnel, were to learn which functions would be most useful, to set up a program to provide them, and, eventually, to aid in the process of determining how an office like this might fit into NHGRI’s future.As this 18-month stint draws to a close, I can report that it has been an exhilarating experience. I am grateful for the opportunity to have worked with outstanding scientists in an area of growing importance and interest. I believe we have pioneered in the provision of bioethics education and counsel to a diverse group of genetic researchers. We have helped to “open the doors and windows” of the Genome Institute, facilitating two-way communication between NHGRI researchers and others interested in genetic and ethics. We have assisted with some knotty problems in genetic research while building a base of knowledge about highly specialized issues that is useful to researchers inside and outside NHGRI. What follows is an abbreviated overview and evaluation of our activities during this period.Main ActivitiesWorking with a core of interested supporters from every branch of the DIR, our office quickly established a roster of activities aimed at meeting identified needs. These included: (1) a consult service able to help investigators address urgent problems arising in their research or in the IRB review process; (2) a program of workshops and discussion groups dealing with challenging ethical issues raised by genetic research; (3) a program of public seminars bringing together NHGRI researchers and other clinicians, scientists, and scholars in the greater Washington area who are interested in genetic ethics; (4) a course on science research ethics to be offered to all NHGRI personnel; and (5) an ongoing program of research activities in genetics and ethics designed to provide depth and substance to the office’s work.ConsultationsIn an institute with scores of...