Privacy Issues in Biomedical and Clinical Research (1998) / Chapter Skim
Currently Skimming:
What, If Anything, Should the Federal Government Do?
What, If Anything, Should the Federal Government Do?
Pages 22-30
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 22... ...
Some participants, particularly Paul Billings, thought that the federal government should play little if any role, given current conditions, in the areas of genetic privacy and genetic discrimination in health insurance. Because health insurance is primarily regulated at the state level, Billings argued, the individual states have more experience and are better equipped to legislate.
|
From page 23... ...
Perhaps the first and most important thing, some workshop participants said, was to keep the issues of genetic discrimination and access to health care separate from the policy issues surrounding genetic research. Because genetic research produces information that, if leaked, could lead to a research subject losing health insurance, there is a natural tendency to put genetic research and genetic discrimination into a
|
From page 24... ...
That is the wrong way to go, Billings said. "I don't think we want to set up a situation where we are balancing people's access to health care that is, research subjects' eventual access to health care against scientific freedom and the conduct of scientific research." Instead, the two issues should be addressed separately.
|
From page 25... ...
Others thought that since national health care is such a controversial topic, it makes more sense to look for solutions that fall short of that. Cynthia Kenyon, a researcher at the University of California, San Francisco, offered one possibility: "Since the primary risk that the individual volunteers face is loss of health insurance, why not have the government guarantee to provide health insurance to every individual that is subject to genetic testing?
|
From page 26... ...
26 PRIVACYISSUESINBIOMEDICALAND CLINICAL RESEARCH "I'm certainly not a legal scholar," said Eugene Carstea of the Saccomanno Research Institute in Grand Junction, Colorado, "but it seems that trouble arises when research information is added to a patient-participant's medical record. Such a policy could protect the subjects of genetic research, thus making the public more comfortable with such research and allowing researchers to recruit
|
From page 27... ...
"Any institution doing human subjects research should have a stiff confidentiality policy in place," Kern said. "Public flogging might be a good thing for violators, and I would say that I think the Feds have to oversee this.
|
From page 28... ...
I am not sure anybody has even tried to challenge it." If institutions doing genetic research could be given such protection, it would guarantee a near-absolute privacy of genetic research data. "Now, nothing will work perfectly, and you can never prevent an individual scientist from acting like a jackass," Kern said, but "the system should work very hard through education and reinforcement to try to prevent such behavior." Then people could volunteer for genetic experiments confident that their genes would not be used against them, and medical research could continue providing the rapid advances that people have come to expect.
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.