In response to Jean DerGurahian's "Genetic testing co. spurs privacy, ethical questions":
I want to comment on the article noted. I think it's great that attention is paid to patient rights, but I worry that articles such as this will continue to spread the (likely theoretical) fear of genetic discrimination.
First, the genome-scanning technique mentioned in this article is not an established method of clinical genetic testing. Providers would not use such results for medical treatment unless interpretation of such results has been well-documented in the literature. Therefore, while discrimination arising from genome scanning may become applicable in the future, it is not the immediate threat that this article makes it appear to be.
Second, I disagree with Deborah Peel's comment about there being no federal law to stop employers or insurers from using genetic data to discriminate. Although it does not specifically address genetic data, under HIPAA, genetic test results in and of themselves cannot be considered a pre-existing condition by insurers. Additionally, Peel does not mention that the Genetic Information Nondiscrimination Act has been under consideration. By the time genome scanning becomes a clinically accepted testing method, federal legislation preventing discrimination will likely be in place. Furthermore, several states currently have protective laws in place that directly address genetic discrimination.
While genetic discrimination can and does occur, it occurs far less frequently than the media claims. The vast majority of patients undergoing genetic testing will not be victims of genetic discrimination. However, the media and many health experts continue to spread fear, which inhibits many patients from pursuing otherwise desired genetic tests. It is true that technology must proceed with caution and prioritize protection of patient rights. However, the fear-mongering approach has been quite effective in delaying the progress of technology and preventing patients from obtaining tests that could greatly enhance their medical care.
Amber TrivediGenetic counselorNorthwestern Ovarian Cancer Early Detection ProgramNorthwestern University/Northwestern Memorial HospitalChicago To submit a letter to YOUR VIEWS, click here. Please include your name, title and hometown.