TeloMe Turns to Crowdfunding to Promote Telomere Testing
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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.