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By Susan Jennings, Ph.D.
23andMe, a personal genomics company based in Menlo Park, CA, is in the process of recruiting 1000 patients with myeloproliferative neoplasms (MPNs), including all forms of mastocytosis, for a research study that was started in August 2011. This project aims to identify differences in the human genome that might predispose a person to a MPN. 23andMe normally provides clients online access to information about their personal genomic data for a fee, allowing a person to learn about various extensions of this data, including diseases to which they might be predisposed, and information about their ancestry. The fee will be waived for eligible research participants, who will be able to view explanations of how their genomic data relates to a list of currently analyzed diseases and traits (provided on the company website, https://www.23andme.com) and explore their ancestry, in addition to other online activities and information. Participants will receive a “free lifetime subscription to access all features of the 23andMe Personal Genome Service”. In addition, as a study participant, you can “share your knowledge and learn from others who, like you, know what it is like to live with a myeloproliferative disease. Ask questions, make connections, form a community… Gain access to early discoveries and up-to-date science about MPNs and available treatments” (taken from https://www.23andme.com/mpn).
Other research projects have been conducted by 23andMe as well: “The 23andMe MPN community is modeled on its highly successful Parkinson’s Disease (PD) and Sarcoma communities. In two years, the PD initiative has not only recruited and analyzed over 5000 participants, but has led to published research findings including two novel gene associations for PD. In just over a year, the Sarcoma initiative has recruited and analyzed data from over 500 participants, proving to be a valuable research platform for rare disease communities. PD and Sarcoma research efforts are ongoing” (taken from the news section of https://www.23andme.com).
The company does not provide diagnoses, although information obtained through the service can be discussed with your doctor to help consider possible lifestyle choices or medical monitoring. It is also possible to participate in the study without reviewing your personal genomic data, if you are not comfortable learning more about it.
Dr. Jason Gotlib from Stanford University School of Medicine and Stanford Cancer Center is a member of 23andMe’s MPN Scientific Advisory Board. In December, he told TMS that there were roughly 400-500 people registered for this MPN research project. If you are willing to participate and believe you are eligible, the study is currently still open to enrollment (as of mid-February 2012). He also mentioned that, to his knowledge, the company is not restricting the percentage of patients in this research group who have mastocytosis.
You can find out more about this research project by visiting https://www.23andme.com/mpn or about the 23andMe service at https://www.23andme.com and at https://www.23andme.com/howitworks (this page also includes information regarding your privacy relating to genetic information). There are some restrictions on where they can send kits (including within the U.S.), so if you are interested in participating, make sure to review this information first. A list of countries to which they can ship is also provided on their website. An online eligibility form for the MPN Research Initiative is available at https://www.23andme.com/mpn/codereq. The form includes questions related to what your specific diagnosis is, who made that diagnosis, and general testing done to determine it. Eligible patients must be diagnosed with an MPN by a medical professional and be able to receive their kit where 23andMe ships. As communication for this research is web-based, participants do not need to be close to a clinical research center.
There are two parts to this MPN study. First, if 23andMe determines that you are eligible to participate, you will receive at kit in the mail for saliva collection. You will be asked to register your kit and give informed consent for study participation online and to mail your sample in for analysis (shipping is free). After receiving the saliva sample, DNA from cheek cells is analyzed to identify differences in it that might predispose someone to a list of diseases and that can help identify a person’s ancestry (and other characteristics). The second part of the study involves collecting information online through specific surveys related to your MPN background, experience, symptoms and responses to treatment. Additional surveys, unrelated to the MPN study, are also available, should you choose to participate.
Please make sure that you thoroughly review the 23andMe website to understand exactly what participation in this study involves, including their Terms of Service
(https://www.23andme.com/about/tos/), Privacy Statement
(https://www.23andme.com/about/privacy/#Full), and Consent Document
(https://www.23andme.com/about/consent/), before you submit the enrollment form. |
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