Integrating Large-Scale Genomic Information into Clinical Practice Workshop Summary (2012) / Chapter Skim
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6 Ethical and Legal Issues
6 Ethical and Legal Issues
Pages 47-52
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From page 47... ...
The ethical and legal issues associated with integrating large-scale genomic information into clinical practice differ somewhat depending on the developmental stage of the technology, said Henry Greely of Stanford University. In the initial stage the technology has been used largely by researchers and by early adopters who are curious about genetic testing, with some overlap between the two groups in the case of research subjects interested in genetic findings.
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From page 48... ...
The most difficult regulatory issues will involve the interpretation of genomic data. When whole-genome analysis is used in the clinic, interpretation will need to be largely automated because, Greely said, "with 6.8 billion base pairs in a diploid genome, you are not going to get a human brain looking at all of those." Software packages will sort findings into different categories for action, and where information belongs will depend partly on the medical needs and characteristics of the patient.
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From page 49... ...
On the other hand, physicians do not need to tell patients about things that are not clinically significant, Greely said, although he admitted that this is a difficult phrase to define clearly. Still, health care providers do not need to convey information about variants of unknown significance that might cause undue anxiety.
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From page 50... ...
"The goal of the medical profession shouldn't be to eliminate possibilities that it will get sued but to do a good job in taking care of its patients, which in turn will limit the number of times it loses lawsuits." The fourth category is the most challenging, Greely said: How can health care providers tell patients about all of the genetic results that are clinically significant? Based on early experiences with whole-genome analysis, an average patient might have roughly 100 clinically significant genetic variants, with 5 to 10 things that are quite important and 90 to 100 that deserve mention.
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From page 51... ...
"The good news of genetic data is it will be protected as much as other health data," Greely said. "The bad news is it will be protected as much as other health data." There will always be some security risk involved with storing the data since it, like any other data, can be compromised illegally or through poor oversight by the user, such as losing a password or a laptop.
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