Perlegen strikes back on privacy

Healthcare IT News has this story:

Last week, patient privacy advocate Deborah Peel, MD, wrote a letter to Healthcare IT News attacking Perlegen Sciences’ plans to work with an EMR vendor to use patient data for genetics research. In a new letter, Perlegen strikes back at Peel.

To the editor, Healthcare IT News:

We are writing to let you know of the substantial elements of misinformation and misinterpretation that were included in a note you’ve published on 3/21/08, titled “Patient privacy rights advocate attacks plans to mine medical records.”

Perlegen shares with Dr. Peel, the author of the note, the highest regard for maintaining patient privacy. We are actively working to protect that privacy in the context of realizing the substantial clinical benefits we all might expect from the advent of more personalized medicine.

Making personalized medicine a reality relies on the discovery and validation of genetic markers to help predict how individual patients might respond to specific medical treatments. Technology for genetic analysis is no longer the bottleneck, thanks to enormous advances in SNP genotyping and next-generation re-sequencing tools. Rather, it is the lack of clinically appropriate, appropriately consented DNA sample sets that has effectively stymied this effort. Our collaboration for de-identified EMR access is designed to solve this bottleneck, in a way that is absolutely consistent with patient privacy and each individual’s right to self-determination.

To reiterate the point we made in our press release – Perlegen will never have access to the specific identity of any patient, nor will any patient’s DNA ever be collected, much less used, without their prior, written and fully-informed consent. That is the law, and Perlegen is firmly committed to following it in both letter and in spirit.

In fact, we will only have access to de-identified data fields, from which we can sort those case records covering patients from whom we believe a DNA sample might be useful in understanding their variable response to treatments they’ve already received. We then work through our EMR provider, who in turn works with both the medical facilities and physicians that treat those patients.

Before those institutions re-identify any patient, the treating hospital or clinic must receive IRB approval for the study. Only at that point may patients be contacted and informed that preliminary review indicates they might be suitable for the study, and asked if they then consent to further review of their records by their physician.

Read Perlegen’s complete letter on Healthcare IT News

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