News Briefs
News Briefs
Keep genetic information private, researchers warn
Volunteers are helping scientists learn valuable information regarding the role genetics plays, but precautions are needed to protect participants from possible discrimination based on results from genetic tests. That’s what researchers at the National Institutes of Health (NIH) in Bethesda, MD, state in the August 27 issue of Science.1
Advances are giving researchers insight into certain diseases, which could lead to new treatments, but "along with these positive effects have come concerns about who will have access to personal genetic information and how it will be used," writes lead researcher Barbara P. Fuller at NIH’s Human Genome Research Institute.
Genetic information is of interest to a wide variety of individuals and organizations. Insurers and employers could use the information as a predictor for future illness, health care costs, or the ability to perform a job, the authors write. To prevent discrimination, scientists should ensure that individually identifiable information not needed for health care does not wind up in a person’s medical file.
"Experimental research data should be kept in the researcher’s scientific files and not placed in the participant’s medical record," Fuller and her colleagues conclude. The authors also recommend that participants giving informed consent should be told of all potential disclosures of information and accompanying risks.
Reference
1. Fuller BP, Ellis Kahn MJ, Barr PA, et al. Privacy in genetics research. Science 1999; 285:1,359-1,360.
Government halts human research
The federal Office for Protection from Research Risks (OPRR) has asked researchers at the University of Illinois at Chicago to stop enrolling new subjects in human research. The temporary order applies to federally funded research at the institution, including research conducted at the medical center. Ongoing research with previously enrolled subjects will continue, however.
The OPRR found that some research projects didn’t have necessary review by an institutional review board and, in some cases, researchers failed to obtain informed consent from some participants. OPRR investigators also found that the university failed to provide its institutional review board with sufficient facilities and support staff.
The university is drafting a correction plan, says Eric Gislason, vice-chancellor for research at the University of Illinois at Chicago. He says research programs at the university have grown rapidly, and federal regulators are applying rules more stringently and comprehensively.
(For more on human research and regulatory action, see Medical Ethics Advisor, July 1999, p. 73.)
UNOS instructs members to stop liver-sharing plan
The United Network for Organ Sharing (UNOS) told its members in Minnesota, Wisconsin, and North and South Dakota to halt its plan to share livers among their sickest patients. According to UNOS policy, livers should be shared among all the sickest patients in a region.
The plan recently adopted by these four states didn’t include Illinois, which UNOS places in the same geographic region.
UNOS officials also instructed its members in the affected states to start a conflict resolution process. "UNOS expects its members to work cooperatively to resolve unique concerns regarding organ allocation," says UNOS vice president Patricia Adams, MD. "Our goal is to get everybody back to the table to determine the best possible solution for patients," she adds.
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.