What do position statements and global positioning systems (GPS) have in common? It occurs to me that just as an association’s mission, vision, brand, and strategic plan guide the leadership in its path to its objectives, the NSGC’s position statements are a metaphorical GPS for a particular issue.
For example, the NSGC Board recently approved a position statement on gene patenting. The basic process to develop the statement was the same as has been used for NSGC’s other position statements. An event in the news triggered the Public Policy Committee to undergo an examination of gene patenting from the perspective of the NSGC. The discussion included, as it always should, consideration of whether the genetic counseling profession has relevant expertise and a unique point of view to bring to a broader debate about an issue. In the end, the Committee concluded that indeed, genetic counselors, in their role in assessing patients’ genetic risks, should share a perspective about the ability of holders of gene patents to issue exclusive licenses. As experts in genetic counseling, we know that genetic testing is changing and moving toward whole-genome and multi-gene analysis. Exclusive licenses on gene patents will impede access and development of genetic testing just as we seek to gain from a growing understanding of how genes interact to cause disease. A draft statement was released to the membership for comment, changes were incorporated, and the Board approved the revised statement.
Now, organizations or people outside NSGC can easily assess where NSGC stands on the issue of gene patenting. It’s the equivalent to mapping “current location” on a GPS! As an added benefit, the NSGC leadership can use the statement to guide policy decisions or requests for comments about the issue of gene patenting. It does not, however, imply that all NSGC members agree with the statement; each member is entitled to his or her own viewpoint, which may differ as a reflection of the growing diversity in our field.
So, if I receive any calls from the media or questions from other organizations about NSGC’s opinion on gene patenting, I’ll enter the coordinates of the particular inquiry into our position statement and evaluate our response.