Even before the development of next-generation DNA sequencing, genetic analysis raised numerous ethical issues. Whole genome analysis, however, raises additional issues and it is important that they be addressed thoroughly as part of any human genome interpretation effort. Personalis founders have been leaders in the field of genome ethics, publishing on the topic well before the founding of the company: Challenges in the clinical application of whole-genome sequencing Ormond KE, Wheeler MT, Hudgins L, Klein TE, Butte AJ, Altman RB, Ashley EA, Greely HT. Lancet p(2010 Apr 29). The concern for professional ethics in genomic medicine has been continued from the inception of Personalis. The company’s first non-CEO employee was a Genetic Counselor, with experience at the whole genome level. The company also established an internal Management-Level Ethics Committee, led by the CEO. This committee meets regularly and reviews all DNA samples and genomic data sets prior to use at the company. The company has also retained the services of an independent IRB and works closely with customer IRB’s to address ethical issues relating to human subjects research.
Terms of agreement
Personalis only collects personally identifiable data (such as your name, address, telephone number or email address) when you voluntarily submit it to Personalis. This information may be used by Personalis personnel as a means to contact you to obtain more information, to improve this website, or to provide you with information that you have requested or additional information which Personalis believes may be of interest to you. The data will not be transferred outside Personalis without your prior consent, but may be used within Personalis or by a company acting as an agent of Personalis for processing and mailing purposes. Personalis may also use this information within the company for performing marketing studies or for other commercial purposes for which it may receive compensation. Personalis may maintain the data collected in an electronic database of voluntarily submitted personally identifiable information. Personalis and its agents may exchange such information with each other or with you over the Internet or intranet systems for the purposes of carrying out the activities described above. In providing some test services, Personalis may receive or create documents or other communications containing protected health information (PHI) related to individuals who are being tested. Personalis will only use and disclose this PHI as necessary to perform those test services, and only as permitted or required by law. While Personalis makes every reasonable effort to protect the information collected through this website, please be aware that there is always some risk involved when submitting data over the Internet. We cannot guarantee that our website is 100% safe from illegal tampering or “hacking.” Any data transmitted over the Internet may be at risk; however, once it is received at Personalis and entered into its database, it has the same protection that Personalis extends to its own confidential information. We track the total number of visitors to our website, the number of visitors to each page of the website, and the domain names of our visitors’ Internet service providers. No personally identifiable information is gathered in this process.
Updating your information
If at any time you wish to stop receiving emails or other communications from us, or if you have submitted personally identifiable information through our website and would like to have that information deleted from our records, please notify us at firstname.lastname@example.org. You may also request access to personal data about you that Personalis holds and you may have the opportunity to request a correction or amendment to your personal data by contacting us at email@example.com.
Links to third party websites
We are committed to protecting the privacy of children. Our website is not intended for or designed to attract children under the age of 13. As noted above, we do not collect personally identifiable information unless you provide it to us – including an individual’s age.
If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, please contact webmaster at firstname.lastname@example.org.