PXE Awareness
Volume 17, Issue 3 November 2011
President's Message
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NAPE’s leadership believes it possible to achieve the greatest good for all our people while also encouraging private investment to solve problems. A simple example is our nation’s transportation infrastructure. Government and businesses work together to develop plans and to fulfill them within legal frameworks designed in the public interest. The process is complex and fraught with efforts to manipulate outcomes. It requires oversight and citizen vigilance. Though not so concerned with moral and ethical issues as human-based research, it may provide a model for creating a framework which recognizes a commitment to humanity within our free enterprise system. Those who live with a genetic disorder need to be part of the process. First we must become informed. We need to involve those around us in the discussion. We must be vigilant in protecting the interests of all against narrow private drives to limit and/or eliminate competition. This issue focuses on the complex problems which will be controlled by private interests if we do not engage in insisting on the greater good. Please read the enclosed items, starting with the story of Henrietta Lacks and her “immortal” cells. Her story introduces the wide range of issues that need resolution. Share these issues with others and keep the conversation going. There is a good chance these soon will become important election issues. Let’s be ready! Happy Holidays, |
Research on human cells, tissue and blood; patient consent; patents on human cells, and the commercialization of human research results – these topics are becoming increasingly important to our national dialogue. How can we best manage each of these problems in the interest of humanity? Can we find guidance in the management of other issues that impact the vast majority of people in our nation? Can private enterprise and the humane care of all citizens be reconciled to the benefit of both?