Anne H—Joining the All of Us Research Program for the Greater Good
The father’s side of Anne H's family is a mystery that begins and ends in Berlin. Her father was raised in the city, escaping in the 1930s with a sister when the Nazis took power. His parents and another sister perished.
The Nazis committed a crime against humanity, robbing Anne and other descendants of Holocaust survivors of the chance to know their families. To help fill in some of the blanks, Anne, 67, has always been interested in DNA ancestry tests, like the ones offered by National Geographic and 23andMe, “opportunities that can be at once miraculous and very devastating, in terms of information they give you,” she says.
A different kind of opportunity to look at her genetic heritage presented itself to Anne on a recent visit to NewYork-Presbyterian Hospital, where doctors were recruiting participants into the All of Us Research Program. Run by the U.S. government’s National Institutes of Health, "All of Us" is different from commercial genomic and ancestry companies.
By analyzing DNA from 1 million Americans, "All of Us" aims to speed the pace of medical breakthroughs. Researchers believe this unprecedented volume of data—together with the extensive clinical history and lifestyle habits collected from each participant—will reveal patterns that will enable the creation of new, more precise medical therapies.
Anne signed up. With no knowledge about the medical history on her father’s side of the family, “it became clear that this was something that could be beneficial for me personally,” Anne says. “And at the same time do some greater good.”
Anne also considered the potential benefits for her children and grandchildren. She is married and has a son, a daughter, and five grandchildren.
Participants in "All of Us" have the option of learning what health information resides within one’s own genome; Anne is unsure what she will decide for herself but thinks the data may be useful for her children and their children.
Her mother had some form of dementia, for instance. “What do you do with that information right now?” says Anne. “It’s the scariest thing because nothing really seems to change its course. There are medicines that can make life easier, but it’s still a horrible diagnosis to receive.”
Perhaps it’s preferable, on a personal level, not to receive bad news one can’t do anything about. “But wouldn’t that information be useful for my kids to have, when there may be room and time to do something?” Anne notes.
Whether a participant chooses to learn about their DNA results, the data they volunteer may lead to a more effective therapy for something like dementia. It may reveal early markers of disease, which could allow doctors to detect the disease before it gets started and stop the neurodegeneration from ever happening.
“I think the potential is enormous,” Anne says.