Memorandum

Date: October 25, 2007

To: John Glaser and Doug Henley

Co-chairs, Personalized Health Care Workgroup

From: Becky Fisher and Amy McGuire

Co-chairs, Confidentiality, Privacy, and Security Subgroup

Re: Confidentiality, privacy, and security issues as they pertain to genetic test information in the electronic health record

One of the four areas that the Personalized Health Care (PHC) Workgroup was charged by the American Health Information Community (AHIC) to address is Confidentiality, Privacy, and Security (CPS) issues as they relate to genetic/genomic test and family health history information in Electronic Health Records (EHRs). During the PHC Workgroup visioning exercise in March 2007, priority areas for the workgroup were identified. As a result, a subgroup of the PHC Workgroup was established to address CPS issues. Further, it was recognized that these issues were related to the work of the AHIC CPS Workgroup. Jointly, the PHC and CPS Workgroups agreed that the PHC CPS Subgroup would work on the unique considerations for genetic and family history information and bring these forward to both the PHC and CPS Workgroups for deliberation. Additionally, it was agreed that specific recommendations to AHIC in this area would be cast in the broader context of CPS issues and would come directly from the CPS Workgroup with input from the PHC Workgroup. To help maintain continuity of the efforts, a member of the CPS Workgroup was identified to participate in the PHC Workgroup.

The PHC CPS Subgroup established an initial goal of identifying any CPS concerns about genetic/genomic test information that may be distinct from other medical or health information in EHRs. The context of the subgroup’s work was to examine characteristics of genetic/genomic test information that could be considered of a different quality and/or nature from other types of medical information a concept often referred to as “genetic exceptionalism.” The attached document provides a framework for discussions about genetic exceptionalism, and should serve multiple applications and audiences. It is intended to help others understand these characteristics of genetic/genomic test information and to provide a structure for deliberations about whether special protections ought to be developed for this information in specific contexts. It should be noted that the subgroup has not made recommendations or judgments as to whether these characteristics warrant specific actions or protections. Rather, the characteristics must be prioritized, weighed, and balanced against competing concerns when specific protections are being considered. Further, recognizing that the AHIC CPS Workgroup has been addressing broader issues of electronic health information exchange CPS policy, general comments to address these issues are also provided. The PHC CPS Subgroup may continue its work in addressing other CPS-related matters.

Attachment