The Many Faces of Diversity

A common criticism of the genetic counseling profession is lack of diversity. In fact, I would guess that many NSGC members have looked around at an AEC plenary session and noticed that most of us look the same. I myself many years ago told another genetic counselor, when making plans to meet her for the first time, “You shouldn’t have any problem finding me. I look like every other genetic counselor.” How do we as an organization increase our diversity? Like any change, the first step is identifying the fundamental issue. Most people think about ethnic differences when they hear the word “diversity”, but true diversity in an organization goes well beyond the inclusion of people with different skin color. Creating a culturally competent organization doesn’t begin with recruiting more people of different ethnicities into the field; chances are, if we did interest them, many might ultimately reject the profession for fear of isolation or a lack of understanding from their potential peers.

True diversity begins by changing how we approach differences of all kinds – diversity of thought, religious background, work environment, and yes, even political affiliations. Pursuing and accepting diversity includes seeking the opinions of those whose backgrounds and beliefs may differ from the majority and actually encouraging their contributions to discussions and explorations of major issues facing the genetic counseling profession. It doesn’t mean that minority opinions have to prevail -- but rejecting them without serious consideration sends a clear message that differences are not welcome here.

In recent years, our profession has begun to expand and branch into new areas of health care. With that expansion comes a “shock” to a culture rooted in a strong, shared history. My conjecture is that extending the open-minded, nonjudgmental approach we use with our patients to discussions with our own colleagues is not only required to increase diversity overall but is actually much more difficult than it sounds. However, the patients we want to serve vary in their own beliefs, political affiliations, and ethnic backgrounds. If we want patients to feel comfortable seeking genetic counseling, they need us to publicly reflect the openness we demonstrate in the patient consultation room in all of our external communications, too.

I look to the past for confidence that we can succeed. I remember the controversy years ago about offering cystic fibrosis carrier screening despite the less than 100% detection rates. There were many who argued it should not be offered while others pushed to accept the less than perfect screening and recognize the important role the genetic counselor could play in educating patients and doctors about the testing limitations. We adapted our practice to accommodate those changes and generally accept that screening is available today. I see no reason why we can’t resolve or accept other differences as well.

The NSGC Board Culture Statement, developed several years ago as part of our organization’s governance changes, reads: “the Board recognizes that diversity exists in many forms, and seeks to maintain a Board that encourages respect for and inclusion of diversity at all levels of the Society.” A 2009 NSGC Task Force on Organizational Cultural Competency developed a plan to create a more welcoming environment, and the Membership Committee will begin implementing this year. Creating cultural competency requires extending the Board’s commitment to diversity to a partnership between the leadership and the membership. We’re ready. Are you?

Position Statements: the NSGC’s Leadership GPS

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.