About Genetic Alliance

About the Council

Genetic Alliance engages individuals, families and communities to transform health. This requires that we as an organization understand what it means to transform systems, dissolve boundaries, create and sustain open space, and promote the process of openness. We understand that to transform systems, we must start with our own, beginning with our very person. Such work calls us, both personally and professionally, to explore the deepest truths about ourselves and the systems we impact.

The name Board, for example, is a descriptor that no longer resonates with the truth of our organization. The overarching body for Genetic Alliance must create space that supports and manifests visioning and transformation at the deepest level. Genetic Alliance requires a structure that goes beyond governance, towards a deeper stewardship that serves openness and supports the rigorous process of self–discovery (awareness) required during our decision–making. We believe that through the sharing of self we discover the greater Self, the communal We. The traditional, institutional view of governance covers the process of decision–making and the process by which decisions are (or are not) implemented. At Genetic Alliance, in order to meet our mission, we need a more in–depth measure of governance that also demonstrates the internal process by which decisions are explored and how we collectively discern, in openness and clarity, the highest good for all concerned. Good governance has long celebrated essential characteristics. According to the United Nations (positioning itself as an acclaimed model), good governance is participatory, consensus oriented, accountable, transparent, responsive, effective and efficient, equitable, and inclusive and follows the rule of law.

Our Council recognizes that stewardship—of self, relationships, and community—calls each of us to deep internal and external communion. Mindful, compassionate stewardship—being home to the whole as we continually listen to "what matters" from the millions of people who rely on our work—is our deepest calling as a Council. All sound stuff, indisputable in intention. These characteristics, however, are easier to describe than to model. By what processes is participation, equity, or inclusiveness assured? When is consensus established? What processes ensure we are accountable, transparent, responsive, effective, and efficient? How is it that many deep truths and profound decisions have emerged from processes that initially defied good governance?

Good governance assures that corruption is minimized, the views of minorities are taken into account, and that the voices of the most vulnerable in society are heard and considered with equanimity in decision–making. It is also responsive to the present and future needs of society. What does "taken into account" mean? Has there been enough openness, enough self–discovery, to allow the majority to do more than hear the minority (or the most vulnerable)? Has the majority truly identified with the minority? Isn't good governance evident when the very distinction between minority and majority disappears?

As we explore our ideas of governance at Genetic Alliance, we must weigh the language of traditional models to make sure that it is congruent with our learning. Where it is not, we must be bold enough to toss out old words in search of those that convey our true intentions. In the face of the suffering to which we are present, we must be insurgents. And so, we have collectively discerned that it is time to transform the Genetic Alliance Board into a Genetic Alliance Council.