You may take a bit of convincing to send a few dollars to filmmaker Denver Jackson, who’s seeking funds to complete his animated short “Cloudrise” through the crowdfunding site Indiegogo. But at least Jackson has this one advantage—you know what an animated film is.
Imagine pitching the Indiegogo crowd for money to pay for “telomere testing.” But that’s exactly what genomic testing firm executive Preston Estep is trying to do with a new crowdfunding campaign to benefit the Personal Genome Project, which was founded by prominent Harvard Medical School genetics professor George Church.
Estep is the CEO of Waltham, MA-based company, TeloMe, which tests the length of telomeres. As his Indiegogo campaign page explains, telomeres are those intriguing tag ends on each of the DNA-containing chromosomes in everyone’s cells. The length of a person’s telomeres is a benchmark of their overall health, TeloMe maintains.
If Indiegogo contributors open their wallets, more test results about telomere sizes can be added to the portfolios of genomic information being collected from hundreds of individuals by the Personal Genome Project—Church’s effort to make such data broadly available to researchers and the public in the hope that it will yield clues about disease.
TeloMe, founded by Church and Estep in 2010, collects saliva samples and provides telomere analysis to the Personal Genome Project under contracts that have yielded most of TeloMe’s revenues to this point. So far, many of the participants in the genome project, which is based at Harvard Medical School, have been knowledgeable insiders in the scientific arena who have agreed to publicly share information about their genomes, their medical records, and even the germs found in their homes. Now Estep, a director at the Personal Genome Project, is taking the genomic data crusade to the masses with the Indiegogo campaign launched early this month.
TeloMe is asking contributors to help pay for telomere testing for participants in the Personal Genome Project by contributing $49. But an alternate option offered to those who kick in $99 —or an early-bird rate of $89—is a telomere test for themselves, or a family member or friend who wants one. With the Indiegogo campaign, TeloMe is launching its first direct-to-consumer testing kit so individuals can find out how their own telomeres are doing.
Telomeres are repeating sequencesof nucleotides, or DNA “letters,” that cap off chromosomes and essentially protect them from wear and tear, including mutations such as gene rearrangements that can have serious health consequences, Estep says. Telomeres naturally dwindle in length as cells divide, but the body’s repair mechanisms normally keep problems at bay.
Estep says TeloMe was inspired by similar Indiegogo campaigns by biological testing organizations, including two crowdfunded “citizen science” projects run by uBiome of San Francisco and American Gut of New Orleans, LA. Each raised more than $330,000 for analyses of contributors’ microbiomes—the populations of micro-organisms that live inside their bodies and affect their health. Both organizations encouraged participants to release their results into a data pool that could be mined for scientific insights.
Although San Francisco-based Indiegogo, one of the world’s leading crowdfunding sites, is heavily used by entrepreneurs in the arts, Estep says it’s becoming a great way to educate the public about new technologies.
“We think that Indiegogo is an outstanding crowdfunding platform,” Estep says. “It’s grown into a primary means for young organizations to reach the public with an unusual and somewhat complex message, and have people learn, and support it, and get involved.”
TeloMe (they pronounce it tella-me) launched its Indiegogo campaign on March 3 and set a fundraising goal of $25,000 by April 11; as of March 18, more than $2,200 had been pledged. But Estep says the main purpose of the crowdfunding campaign is outreach to people who are curious about their health and may be willing to share their genetic data.
For people who are leery about having their whole genomes tested, a telomere test is kind of a baby step. Rather than looking at genes, it simply measures the length of the repeating nucleotide segments that make up telomeres. Very short telomeres may make people vulnerable to illnesses such as cancer and heart disease, Estep says.
Each time a cell divides, its daughter cells lose some telomere length. But the body has a repair system—an enzyme called telomerase that tacks more nucleotides back onto the telomeres. By the time a person is middle-aged, telomere lengths vary widely among individual cell types. This is because some cells, like those in the skin, divide more frequently than others. In addition, telomerase’s repair activity varies in different bodily tissues, Estep says.
TeloMe’s test, a modification of the classic Southern blot assay, gauges the length of telomeres in saliva cells, which are derived from blood cells. Estep says blood cells give a good snapshot of cells in the body with the shortest telomere lengths.
A finding of abnormally short telomeres could signal doctors to look for underlying causes, such as genetic mutations or simply a high level of stress in the patient’s life, Estep says. Once alerted, individuals may be able to lengthen their telomeres through simple lifestyle changes, such as exercise, diet improvements, and stress management, he says. But more data from more people is needed before the health effects of telomeres, and efforts to lengthen them, are fully understood, he says.
A recent study in the Journal of the American Medical Association suggests that people with shorter telomeres on a key type of blood cell may be more vulnerable to infections with the common cold germ—even in those in their early 20‘s.
“This was a bit surprising even to scientists who work on telomeres,” Estep says.
A greater knowledge of disease patterns may result from combining data about telomere lengths with the whole genome sequences captured from the participants in the Personal Genome Project, who now number something over 1,000. The project’s goal is to enroll 100,000 people; but under Harvard’s Institutional Review Board requirements, each candidate must pass an enrollment exam to demonstrate that they understand the risks of divulging their genome data and health records publicly, Estep says.
Among the risks: Participants may be upset by learning of potentially serious health consequences from their genetic mutations, at a time when the science of interpreting those results is still evolving and may lead to errors, according to a study guide prepared by the Personal Genome Project. Then there are privacy concerns. Even if participants’ data appears under a code name in the public database, it may be easy for others to figure out who they are, the project warns. Employers and insurers may also discriminate against people based on their genetic health risks, despite federal legislation designed to prevent this.
One participant, the Bloomberg reporter John Lauerman, wrote a story in November about his long diagnostic quest after his genome was sequenced under Church’s supervision. Lauerman found out that he had a genetic mutation that raises the risk of blood clotting—which may have explained his occasional symptoms of abdominal pain and blind spots in his eyes.
The genome project, however, cautions candidates that they’re unlikely to derive personal health benefits from participating.
TeloMe will also require a written informed consent document, but not an exam, from people who sign up through Indiegogo to receive an assessment of their own telomere lengths, Estep says.
They can keep their results private—their report will compare their telomere length to a composite trend line. But if they agree to share their data, their report will include the data points of others for comparison, Estep says.
Estep, who studied under Church to take his PhD in genetics at Harvard, is now mastering the Indiegogo dashboard controls and working with a social media advisor to publicize his crowdfunding campaign through Facebook, Twitter, YouTube, and other channels.
“We’re just learning how to do this,” Estep says.
Here’s a video from TeloMe’s Indiegogo campaign page.
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