Edward W. is a union man through and through. In 1976, he joined the SEIU Local 32BJ, the nation’s largest property services union, and he has remained a member ever since. For 23 years, he worked in the World Trade Center and was present for the 1993 bombing. Though he had moved on by 2001, he lost many friends that September.
By then he was working for the union directly, serving in a variety of roles—organizer, business agent, grievance representative—over a 15-year span. At 62, he is retired now, but the labor movement’s ethos of sacrifice and solidarity are firmly part of Edward’s worldview.
“Since I was young, it was instilled in me by my mother to help others out,” Edward says. “Working for the union, and being a union member in general, that carried over.”
It was in this spirit that Edward enrolled in the All of Us Research Program. He filled out an extensive survey of clinical and family history and submitted blood samples that will be used to sequence his genome. He also joined the Participant Advisory Board, helping program administrators reach the program’s goal of 1 million volunteers.
“If there’s anything I can do to contribute to the treatment and prevention of disease for myself, my family members, and others, then that’s something that I’m interested in,” says Edward. “I think being a part of a program that could change the face of medicine is a powerful thing.”
I think being a part of a program that could change the face of medicine is a powerful thing.
The size and scope of the study are unprecedented. If it is truly to reach all populations in the country, it will require the combined expertise and insights of everyone involved, not just the researchers themselves. In this endeavor, Edward’s experience in organizing is an asset.
“You’ve got to reach out to people in a language that they understand, in terms that they understand,” Edward says. “I think it was Tip O’Neill who said ‘all politics is local.’ If this program is pitched to people personally, by people they know, it should lead to more participation and involvement.”
For his part, Edward intends to recruit volunteers from the union to which he has been a member most of his life. The success of the program will depend on reaching a critical mass of data, where patterns previously invisible are revealed. The process of gathering that much data from an individual is time-consuming. “This is not like getting people to sign a petition,” says Edward. “This is a commitment.”
The best way to ensure that commitment is to get people invested in the possibilities of this research, Edward says. Unlike previous attempts to create a bank of genetic data, “All of Us” isn’t trying to cure one particular disease; it’s trying to gain insight into dozens of diseases. It’s impossible to predict what insights will emerge, simply because nothing like it has ever been attempted.
That’s what captured the imagination of Edward and what he hopes will capture the imagination of others.