A day forgotten, a day remembered

Do you know what happened on 11/21/2009?

Nearly 47 years earlier everyone remembered what happened that day, 11/22/1963, the day JFK was assassinated. 11/21/2009 is a day of great importance, but this day went unnoticed by the vast majority of the United States.

Why was this date so important? One word – GINA.

On a day when mammogram testing and health care legislation dominated the news GINA went unnoticed. GINA, though having little impact on our current day to day lives, may have an even larger impact on society than the topics that dominated the news. Who is GINA? GINA is not actually a person, but rather an acronym for the “Genetic Information Nondiscrimination Act” of 2008, which took affect on 11/21/2009. Employees are now protected against genetic discrimination as part of the Equal Employment Opportunity Commission, joining categories such as race and age.

The idea that a company could test employees genetic information may sound like science fiction, especially for those who have seen the movie GATTACA, but like some other science fiction ideas given technological advances and time fiction can become non-fiction. On 10/09/2005 IBM became the first company to initiate a policy against discrimination based on genetic information. In 2007 IBM lobbied congress to pass the Genetic Information Nondiscrimination Act. On 10/06/2009, nearly four years from when IBM announced its discrimination policy, IBM releases a press release on their technological advances in DNA transistors. The DNA transistors could lower the cost of human DNA testing from $2.7 billion (Human Genome Project) to a range of $100 to $1,000.

At the $1,000 price point DNA testing can become affordable for millions of people, resulting in ‘personalized medicine‘ and increased awareness of genetic cancer risks. Mammograms are the best current technology have to detect breast cancer, but by no means is it the best possible technology as there are concerns on false positives. DNA testing could be the technology that replaces (or at worst supplements) mammograms, changing the way society thinks, acts and lives.

In order for most nonprofits to bring about systemic change they need to form coalitions or have an advocacy component. Private charities (foundations) aside, nonprofits are allowed to lobby within certain limits. In 1995 the first proposal to protect against genetic discrimination was made in the house. In 1997 the Coalition for Genetic Fairness was formed, consisting originally of civil rights, disease-specific and health care organizations. In 2005 the coalition expanded to include industry groups and employers. On May 21, 2008 GINA was passed, the coalition having united more than 500 organizations and thousands of individuals.

Change does not happen over night. There are many important factors such as patience, stakeholder management, communication, burning platforms, luck and leadership. Currently nonprofits are working to protect employers from discrimination based on sexual preference and gender identify. According to the ACLU

“Firing or refusing to hire someone because they are gay or lesbian is legal in 29 states. And job discrimination against people based on gender identity is legal in 38 states.”

While the passing and effective dating of the GINA legislation should be remembered and celebrated, there is still a lot of work to do make shaping our government to be of the people, by the people and for the people.

Nonprofit Impact | Language, idioma, and لسانIM

Have you ever been asked a tough question that was hard to answer? Imagine if that was asked in a language you didn’t understand? It is difficult enough answering a tough question, but even more so when there is a language barrier.

Instead of just one question between two people imagine all the conversations the ~1,500,000 nonprofits in the United States have.  There is no standard vocabulary for the conversations so concepts such as impact, output and outcomes are not universally understood and used.  This is a hurdle that needs to be overcome before trying to tackle even more complicated questions.  For example what does an outplacement organization mean when they talk about jobs placed? One organization may count the number of people who received a job, while another only counts those who received a job and held it for a certain time period.

Why is this important? If we look at this from a different perspective that may provide some additional insight. Taking the optimistic approach, what if we all spoke the same nonprofit language. A biblical story offers some interesting insight on this.

There is a story of a man named Noah, who builds an ark to save people and animals from a great flood.  Where this gets interesting is after the flood all of humanity spoke the same language.  People could now work together on a cause and accomplish great things, enabled by their common language.  Instead people worked together on the Tower of Bable, to be built to touch the heavens as a showcase of their great skill.  As a consequence humanity was scattered across the Earth, a common language was lost.

Tower of Babel (painting by Lucas van Valckenborch)

In the story people are empowered by a common language and can accomplish great things, the group was greater than the sum of its parts.  This blog is a start of a discussion on how a common nonprofit language can bring about greater social change in the 21st century.  I propose a common nonprofit language can enable nonprofits to increase and improve their collaboration, analysis  and available capital.  I’ll discuss specific proposals such as the Impact Reporting and Investing Standards (IRIS), while also providing new ideas.  I look forward to comments and feedback along the way.