Personal stories remind us why we do what we do.
Starring: Irene Cross
Created by: Kaline Langley & Ken Vetrano
Photography by: Kaline Langley
The coffee and pastries splayed across her wooden table are forgotten as Irene Cross speaks. It’s quiet in her apartment, the light taps of rain on the window seem to come from far away as we lean in to listen. As she recounts her life’s history, she explains:
“Everybody has a story… if they just have somebody who is interested in hearing it,”
Irene is an eighty-three year old mother of two and grandmother of two, a lover of terra cotta, and a genomics enthusiast. Irene was also diagnosed with ovarian cancer over thirty years ago, and remembers the confusion as well as the terror.
And Irene isn’t the only one.
We all share a common experience to some degree. We all have stories about Monday morning’s spilled coffee or a flat tire. But only some experience Monday morning’s heart monitor beeps, the hushed whispers of nurses, or the impending silence of an unsaid inevitability. For Irene, the latter was how she lived, waiting in angst for a diagnosis to a cancer that affects millions of women each year. She says:
“I get emotional… because when I hear of people getting ovarian cancer, it’s a sisterhood of sorrow,”
Sometimes, these stories can be cut short. Lives can be reduced to a single illness that may have a cure, but leaves in its wake debilitating symptoms. Others face illnesses with no cure at all. Patients and researchers alike continue to work hard to seek answers to these illnesses. By meticulously combing through every available avenue, we all aim to help cure, educate, and be able to add more chapters to our story. We want to help extend our stories so we can share our experiences with strangers over coffee.
Over the past decade, there has been a boom in the amount of data available to the scientific community. Led by the plummeting cost of DNA sequencing, more and more patient genomes are being sequenced. Further, at-home DNA tests now give anyone access to their genetic information. But while this revolution in genomic access has proven powerful for researchers, patients, and the simply curious, it has not been without its drawbacks. Questions over data ownership and security have eroded public trust, causing people to miss out on gaining genetic insights about their ancestry, traits, and disease risks. With fewer genomes available to examine, scientists are limited in what they can discover, slowing down progress in the race to cure diseases like the one faced by Irene.
Why does genomic data sharing even matter?
“Most people who have had a life-threatening illness are eager to share it. There’s a lot of people who would want to help people who have those illnesses.”
For many people, their homes are private sanctuaries reserved to family and friends. But that’s not Irene, she’s the type of person who enjoys sharing personal experiences. Though we had never met Irene before last week, she opened her doors wide and her arms even wider with embrace as we quickly became friends.
This is what attracted her to our service as an early adopter–the ability to learn more about herself and the chance to participate in humanity’s genomic story, or in her own words;
“[with Nebula] there would be more genes analyzed than with 23andMe and I’m one of those who think more is better.”
The ability to sequence more genes gives science the opportunity to study numerous variations of genes from different people. Having robust, genetically diverse pools of data is vital for research and finding cures for [rare] diseases. Irene wants the same thing we do, and that’s making sure future generations are able to share their stories–because everyone deserves the chance to live a long, fulfilling life.
Human longevity is important for Irene. She’s already armed her family with as much knowledge as possible regarding the power that comes for both consumers and researchers with genomic sequencing. As a result, both her son and daughter have chosen to get sequenced with Nebula Genomics. Their mission is clear: that as more people share their genes, more information will be revealed about their own.
“Along the path of one’s life are the detours that take them closer to a bad outcome or a good outcome.”
The information that Nebula is delivering will only be as valuable as the services and experiences it’s wrapped around. Nebula provides a private and secure way to learn more about genetics and ancestry. For Irene, she’s happy to have her whole genome sequenced, but she doesn’t have time to earn a Ph.D. and become well-versed in scientific jargon. New features like our Nebula Research Library have helped her better understand her genomic data, and Irene has already enjoyed exploring the curated updates sent to her weekly.
As the afternoon continued, Irene wasn’t shy with her criticisms and made sure to put us in check throughout our talk.
Spoiler Alert: We’re early on and have a lot more to improve.
Although we’re still in our infancy, we’re maturing rapidly and with these sudden growth spurts come some awkward moments. Adolescence is difficult to navigate and we rely on those around us like Irene to make sure we’re progressing in the right direction. Our greatest asset isn’t technology or science, it’s our community. People like you and Irene who make the decision to use our services are what will determine whether or not Nebula is successful. If we’re not building an experience that delivers what you and the rest of the Nebula community needs, then it doesn’t matter how advanced our platform is.
With Nebula’s development of cryptographic technology that allows you to stay in complete control of your genomic data and who you decide to share it with. Our customers are equipped to securely learn more about their genetics while simultaneously empowering them with the ability to contribute to scientific research if they choose. For some, like Irene, this contribution means a way to help ensure that people will be able to continue their stories for a while longer.
“You think about your own story and the stories of people you know, and every one of us–we know people and everybody’s is as different and as rich.”
We’re interested in hearing why you chose to dive in with Irene and us. Reach out to firstname.lastname@example.org and maybe we’ll show up with an appetite for coffee and conversation in person! Together, we can help one another discover more about ourselves and share our stories over afternoon coffee.
If you are interested in beginning the journey of owning your genetic data and better understanding your genes, order your kit today.