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Privacy Policy

This Privacy Policy (the “Policy“) governs the manner in which Editas Medicine, Inc. and any of its affiliates (the “Company” or “we,” “us” or “our“) collects, uses, maintains and discloses information collected about you through your use of editasmedicine.com (the “Web Site“), and through our clinical trial activities in Australia and New Zealand. Information collected in connection with our clinical trials conducted in Australia is governed by the Privacy Act 1988 (Cth) and the Australian Privacy Principles (“Australian Privacy Laws“) and for clinical trials conducted in New Zealand is governed by the Privacy Act 2020 and Information Privacy Principles (“New Zealand Privacy Laws“), as applicable.

By using the Web Site, you acknowledge that you have read this Policy. Where applicable law requires us to obtain your consent for a particular collection, use or disclosure of personal information, we will request that consent separately. Participation in a clinical trial is subject to the consent process described in the applicable PICF. If you do not provide personal information that is necessary for us to respond to your request, we may not be able to respond to or process that request. We reserve the right to change this privacy statement at any time. If we make any material changes to our privacy statement, we will post a new statement on the Website and update the effective date.

Information we collect

Personal Information You Provide. When we use the term “personal information” in this Policy, we mean any information or an opinion about an identified individual or an individual who is reasonably identifiable. We collect any personal information you provide us through the Web Site, for example, when you enter information into any form fields on the Web Site. In particular, we may collect the following:

  • Contact information, such as your name, email address and phone number, which we may use to communicate with you and respond to your requests and inquiries;
  • Communication preferences, which we use to manage how we engage with you; and
  • Inquiries you make, including the content of your voice and email messages, which we use to respond to your inquiries.

Information Collected Automatically. We use certain technologies on the Web Site to collect information that does not directly reveal your identity. Some of this information, including IP addresses, device or browser identifiers and online activity information, may constitute personal information, either on its own or when combined with other information. Where it constitutes personal information, we handle it in accordance with this Policy. The technologies we use include the following:

  • Logging functionality. We may collect information about your visit to the Web Site, including the pages you view, the links you click, the device you use to access the Web Site and other actions taken in connection with the Web Site and services. We may also collect certain standard information that your browser sends to every web site you visit, such as your IP address, browser type and language, access times and referring Web site addresses.
  • Analytics. We use analytics providers, such as Google Analytics, to help us evaluate and measure the use and performance of the Web Site. To opt out of the aggregation and analysis of the data collected about you on the Website by Google Analytics, visit https://tools.google.com/dlpage/gaoptout and download and install the Google Analytics Opt-out Browser Add-on.

If you are a participant in our clinical trials conducted in Australia or New Zealand, we may collect personal information about you, including:

  • Demographic information, such as your gender, age and date of birth;
  • Sensitive information, such as your health information, genetic information and pregnancy information. Sensitive information is a subset of personal information given additional protection under Australian Privacy Laws, and we will only collect this information with your consent; and
  • Other information you may authorise us to collect, including as set out in a PICF.

This personal information may be collected directly from you or from third parties, such as the institution conducting the clinical trials, your health practitioner or your health service providers. Information relating to what types of information is collected and how your information is collected is further described in your PICF.

Use of personal information

In addition to the uses described above, we use the information we collect through the Web Site, both personal information and other information, for the following purposes:

  • internally to serve our users and to enhance and extend our relationship with our users;
  • operating our business, maintaining, delivering and improving services we can offer to our users;
  • preventing, investigating or providing notice of fraud, unlawful or criminal activity or unauthorized access to or use of personal information, the Web Site or data systems or to meet legal obligations; and
  • enforcing our Terms of Use.

Personal information you provide to us in connection with clinical trials conducted in Australia or New Zealand will be used for the primary purpose for which it was collected, or for purposes directly related to the primary purpose of collection that you would reasonably expect, including:

  • conducting and managing the clinical trial in which you are a participant;
  • analysing trial data and preparing study results;
  • complying with any reporting or legal requirements under applicable privacy laws in relation to the clinical trial, including reporting on and managing an adverse event; and
  • as otherwise expressly set out in the PICF.

Disclosure of personal information

Except as set forth in this Policy, we do not disclose, sell, rent, loan, trade or lease any personal information collected through the Web Site to any third party. We may share your personal information with third parties in the following ways:

  • Affiliates. We may disclose your information to other companies within the Editas Medicine family of companies.
  • Partners. We may disclose your information to our partners, including other companies, such as those listed or referenced on the Web Site.
  • Service Providers. Third party service providers who perform services on our behalf may have access to your personal information in the course of providing the services to us. These providers include IT services and support providers, as well as analytics providers and services providers who help us with responding to your requests. We typically require these service providers by contract to keep information confidential, and to only use the information on our behalf.
  • Legal Process, Safety and Terms Enforcement. We may disclose your personal information to legal or government regulatory authorities in response to their requests for such information or to assist in investigations. We may also disclose your personal information to third parties in connection with claims, disputes or litigation, when otherwise required by law, if we determine its disclosure is necessary to protect the health and safety of you, us or others or to enforce our legal rights or contractual commitments that you have made.
  • Business Transfers. Your personal information may be disclosed as a part of a corporate business transaction, such as a merger, acquisition, joint venture or financing or sale of company assets, and could be transferred to a third party as one of the business assets in such transaction. It may also be disclosed in the event of insolvency, bankruptcy or receivership.

Personal information you provide to us in connection with clinical trials conducted in Australia or New Zealand may be disclosed to third parties where reasonably necessary for the primary purpose for which it was collected, or for purposes directly related to the primary purpose of collection that you would reasonably expect, including to the following third parties:

  • Legal Process, Safety and Terms Enforcement. We may disclose your personal information to legal or government regulatory authorities in response to their requests for such information or to assist in investigations. We may also disclose your personal information to third parties in connection with claims, disputes or litigation, when otherwise required by law, if we determine its disclosure is necessary to protect the health and safety of you, us or others or to enforce our legal rights or contractual commitments that you have made. Such authorities include the Therapeutic Goods Administration in Australia, the New Zealand Medicines and Medical Devices Safety Authority in New Zealand, or the Food and Drug Administration in the USA;
  • Affiliates. We may disclose your information to other companies within the Editas Medicine family of companies.
  • Service Providers. Third party service providers who perform services on our behalf for the clinical trials may have access to your personal information in the course of providing the services to us. These providers include local sponsors, the institution and site where the clinical trials are run, IT services and support providers, as well as analytics providers and services providers who help us with conducting the clinical trials. We require these service providers by contract to keep information confidential, and to only use the information for the purposes of the trial and on our behalf.
  • Ethic committees. We may disclose your information to the human research ethics committee that reviews the clinical trial.
  • Other third parties as expressly set out in the PICF.

Storage of personal information

We hold personal information in electronic systems and, where applicable, in paper records. We take reasonable steps to protect personal information from misuse, interference, loss and unauthorised access, modification or disclosure.

We store the personal information collected in connection with our clinical trials in Australia securely at the study site for the duration of the study. Following completion of the study, the information is transferred to a secure storage facility. The personal information is retained for 15 years following the completion of the study, after which it is securely destroyed.

For clinical trials conducted in New Zealand, the PICF will set out where your personal information is stored and how long we retain your personal information following the completion of the study.

If personal information in the study data we hold about you is affected by a data breach, we will notify you and the Office of the Australian Information Commissioner (the “OAIC”) in Australia or the Office of the Privacy Commissioner (the “OPC”) in New Zealand, where the loss, unauthorised access or disclosure is likely to result in serious harm to you.

Children / Minors

The services made available through this Web Site are not directed to, and we do not intend to, or knowingly, collect or solicit personal information from children or minors under the age of 13. If you are under 13 years old, do not provide us with any personal information by any means. If a child under 13 has provided personal information to us, we encourage the child’s parent or guardian to contact us as provided below to request that we remove the personal information from our systems.

If you are a participant in clinical trials conducted in Australia or New Zealand, we may collect information about your child with your consent if you or your partner becomes pregnant during or after your participation in clinical trials conducted in Australia or New Zealand. Your child’s personal information will be treated in the same manner as described in this privacy policy, or as set out in the PICF for clinical trials in New Zealand, as your personal information.

Choice and access

Editas Medicine gives users the following options for accessing, changing and deleting personal information previously provided, or opting out of receiving communications from us:

– email us at info@editasmed.com

We will retain your personal information for as long as reasonably useful for our purposes consistent with the terms of this Policy and as necessary to comply with our legal obligations under the applicable privacy laws or data retention policy, to resolve disputes and to enforce our agreements.

In connection with the clinical trials conducted in Australia or New Zealand, you may request access to, or correction of, the personal information we hold about you by using the contact details at the end of this privacy policy or as set out in the PICF for clinical trials in New Zealand. We will respond to your request within a reasonable time, and in any case no later than 20 working days after the request is received for any request made under New Zealand Privacy Laws. We will generally provide access to your personal information or make a requested correction where appropriate. If we refuse your request, we will provide reasons for our decision, including where refusal is permitted under Australian Privacy Laws or New Zealand Privacy Laws.

Your consent for us to collect, use and share your personal information in relation to the clinical trials can be withdrawn. If you decide to withdraw your consent, you will not be able to stay in the study. However, any of your personal information collected up to the time you withdraw your consent will form part of the study results, will continue to be used for analysis, and will be stored as part of the study records to comply with clinical trial regulations. We will not collect, use and share any personal information about you from the time you withdraw your consent.

International Data Transfers

Editas Medicine is headquartered in the United States and your personal information may be transferred to the United States or other locations outside of your state, province, country or other governmental jurisdiction where privacy laws may not be as protective as those in your jurisdiction. Where personal information is disclosed to an overseas recipient, we take the steps required under applicable law to ensure that it is appropriately protected. These steps may include contractual safeguards addressing permitted uses and disclosures, security, retention, data breaches and the exercise of individual rights.

In relation to your personal information collected in connection with clinical trials conducted in Australia and New Zealand, where permitted by applicable privacy law and as described in this privacy policy or as set out in the PICF for clinical trials in New Zealand, we may disclose some of your personal information from Australia and New Zealand to recipients located overseas in the US, UK or the EU. Where we disclose your personal information to a recipient located in a country outside of Australia and New Zealand whose laws, regulations, or regulatory framework do not provide a level of protection for your personal information that is at least equivalent to that afforded under Australian Privacy Laws or New Zealand Privacy Laws, as applicable, we will ensure that the recipient keeps your personal information confidential through contractual obligations.

Links to other Websites and Mobile Applications

For your information and convenience, the Web Site contains links to websites and mobile applications, such as LinkedIn or Workable. These websites and/or mobile applications are operated by third parties. Some of the mobile applications may collect sensitive information about you, such as location information. This Policy does not apply to, and we are not responsible for, the practices of third parties that collect your personal information either through their websites, mobile applications or otherwise. We encourage you to review the privacy policies of those third parties to learn about their information practices.

Updates to this Policy

We may update this Policy from time to time to reflect changes in our practices or applicable law. We will publish the updated Policy on the Web Site and indicate its effective date. Where a change materially affects the handling of personal information and applicable law requires additional notice or consent, we will provide that notice or request consent separately. Changes affecting a clinical trial will be communicated in accordance with the applicable PICF, ethical requirements and applicable law.

Questions and concerns

If you have any questions, comments or complaints about this privacy statement, the practices of our Web Site, or your dealings with our Web Site, or relating to the handling of your personal information in connection with our clinical trials in Australia, please contact us at the following address or email us at info@editasmed.com.

Editas Medicine, Inc., 11 Hurley Street, Cambridge MA 02141

Once we have received your complaint, we will investigate and endeavour to respond to you within a reasonable time.

If you have any questions, comments or complaints relating to the handling of your personal information in connection with our clinical trials in New Zealand, please contact us at the contact details provided in the PICF.

If you are resident in Australia, or your personal information has been collected in connection with a clinical trial conducted in Australia, if you are unhappy with our response time or believe there has been a breach of Australian Privacy Laws, you can lodge a written complaint with the OAIC at:

OAIC
GPO Box 5288
Sydney NSW 2001
Email: privacy@privacy.gov.au
Phone number: 1300 363 992

If you are a resident in New Zealand, or your personal information has been collected in connection with a clinical trial conducted in New Zealand, if you are unhappy with our response time or believe there has been a breach of New Zealand Privacy Laws, you can lodge a written complaint with the OPC at:

OPC
PO Box 10 094
Wellington 6140
New Zealand
Phone number: 0800 803 909
Website: www.privacy.org.nz