Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
In this issue...
Also available in pdf.
1997 Santa Fe Highlights
Human Genome Project Administration
In the News
Software and the Internet
Meeting Calendars & Acronyms
ELSI Grantees Address Accelerated Societal Impact of Genome Data
Rapid worldwide progress in human genome sequencing has heightened the urgency of addressing the many complex ethical, legal, and social issues (ELSI) surrounding genetic data. Some topics presented at the Santa Fe workshop are summarized below.
Testing, Managed Care, and Confidentiality
Central to confidentiality concerns in the MCO setting, Kotval suggested, is the practice of utilization review, which tracks each physician's referral and test-ordering practices and sometimes even treatment protocols. She observed that the MCO setting presents some unique ethical dilemmas because physicians and other personnel are MCO employees or contractors and because payor and provider functions are contained within the same entity. Physicians, no longer free agents, may be caught between competing MCO and patient interests.
She suggested that traditional concepts of interpersonal morality with regard to confidentiality may not apply to institutional decisions because institutions are not moral beings. Organizational decisions are made for the institution's good, and values implied by such decisions may differ from those held by individuals in their personal lives.
DNA-based predictive tests for adult-onset disorders or predispositions may, therefore, be used by insurance companies to discriminate in the interest of cutting costs. Kotval emphasized that cost-tracking is not restricted to for-profit, market-driven managed care.
Kotval's group seeks to (1) understand the context in which DNA-based tests will be used by MCOs, (2) identify policy gaps that could allow misuse of confidential medical information, and (3) make practical recommendations to remediate these gaps. She stressed that genetic information increasingly will be an inseparable part of the medical record. If individuals are to avail themselves of the benefits of genetic testing, however, they must be assured that the medical record is confidential.
"In the popular imagination," she said, "one's genetic makeup is perceived as fundamental and integral to the self, revealing something deep, basic, and even final about a person, adding to [the genetic data's] sensitivity and raising concerns about its possible misuse. Our genes are fraught with both personal and cultural significance."
Anguish of Genetic Testing
Mental Retardation Organization Viewpoint
In discussing the future possibility of gene-based cures, Davis noted that most of The Arc's workshop participants support increased funding for research to cure mental retardation and that this does not devalue those already affected. Davis emphasized the need for education to (1) promote widespread discussion before policy is enacted to govern the use of future technologies and (2) allow informed personal choices regarding testing and participation in research. She concluded her presentation by reminding the audience that "the potential for cure for some must not make us less accepting of those living with the condition." (See PDF for the full text of Davis's talk.)
Tobin is developing an interactive CD-ROM course to aid physicians who have had little or no training in clinical applications of molecular genetics. This course, "The New Genetics: Courseware for Physicians; Molecular Concepts, Applications, and Ramifications," will provide continuing medical education credits for practicing physicians in basic genetics, molecular techniques, clinical applications, and ELSI. Probable release date is spring 1999.
The electronic form of the newsletter may be cited in the following
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.