PRIVACY NOTICE

VOYAGER THERAPEUTICS, INC.

PRIVACY NOTICE

(Effective: December 20, 2018)

Voyager Therapeutics, Inc., a Delaware corporation (“Voyager,” “We” or “Us”) recognizes and respects the privacy rights of individuals with regards to their personal data. This Privacy Notice (the “Notice”) explains what types of personal data Voyager may collect from you and how we use it. This Notice also explains the policies and practices that we have developed to safeguard personal data and to comply with applicable data protection laws. Please read this Notice carefully to understand what personal data we collect, how we collect it, how we use it, who we may disclose it to, and how you can manage your personal data.

If you have any questions concerning Voyager’s privacy practices or wish to access or correct personal data that Voyager has collected from you, please contact us as described in Section A of this Notice (“How to Contact Us”).

A. HOW TO CONTACT US

1. Inquiries arising from U.S.A. or non-European Economic Area Countries:

Company name:
E-mail address:
Postal address:

Voyager Therapeutics, Inc.
Privacy@vygr.com
Voyager Therapeutics, Inc.
Attn: Privacy Committee
75 Sydney Street
Cambridge, MA 02139 USA

2. Inquiries arising from the European Economic Area:

Data Protection Officer (“DPO”):
DPO e-mail address:
DPO postal address:

Dr. Phil Griffiths LLM
sar@thedpo.co.uk
The DPO Ltd, 3rd Floor
Capital Tower, Cardiff, UK. CF10 3AZ

B. DATA WE COLLECT ABOUT YOU

We may collect, use, store and transfer different categories of personal data about you which we have grouped together as follows:

  • Identity Data includes first name, maiden name, last name, username or similar identifier, marital status, title, date of birth and gender.
  • Contact Data includes billing address, delivery address, email address and telephone numbers.
  • Financial Data includes bank account, payment card details, and payroll data.
  • Transaction Data includes details about payments to and from you and other details of products and services you have purchased from us.
  • Technical Data includes internet protocol (“IP”) address, your login data, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform and other technology on the devices that you use to access our website or intranet.
  • Profile Data includes your username and password on our website, our intranet, purchases or orders made by you, your preferences, and feedback and survey responses.
  • Usage Data includes information about how you use our website, intranet, products and services.
  • Marketing and Communications Data includes your preferences in receiving marketing from us and our third parties and your communication preferences.
  • Special Categories of Personal Data includes details about your race or ethnicity, religious or philosophical beliefs, sex life, sexual orientation, political opinions, trade union membership, information about your health (including health-related personal data that you may provide to Voyager or its agent in relation to a clinical trial), and genetic and biometric data.

C. HOW WE COLLECT INFORMATION ABOUT YOU

  1. Direct interactions. You may give us your Identity, Contact, Financial Data and Special Categories of Personal Data by filling in forms or by corresponding with us by postal mail, phone, and e-mail or otherwise. This includes personal data you provide when you:
    • apply for our products or services;
    • create an account on our website;
    • subscribe to our service or publications;
    • request marketing information to be sent to you;
    • enter a promotion or survey;
    • give us some feedback;
    • provide unsolicited information to us;
    • apply for employment with us or when you become an employee; or
    • agree to provide information to us in relation to a clinical trial;
    • agree to take part in a clinical research program.
  1. Automated interactions. As you interact with our website or intranet, we may automatically collect Technical Data about your equipment, browsing actions and patterns. We collect this personal data by using cookies, and other similar technologies. For additional information about how Voyager uses cookies and similar technologies, see our Terms of Use at the following URL: https://www.voyagertherapeutics.com/terms-of-use/.
  2. Third parties (or publicly available sources). We may receive categories of personal data about you from various third parties and public sources as set out below:
    • Technical Data from analytics providers such as Google; advertising networks and search information providers.
    • Contact, Financial and Transaction Data from providers of technical, payment and delivery services.
    • Identity and Contact Data from data brokers, aggregators or recruitment agencies.
    • Identity and Contact Data from publicly available sources such as Companies House and the Electoral Register.
    • Special Categories of Data including data concerning health from clinical research organisations (“CROs”) conducting clinical research on our behalf.

D. HOW WE USE YOUR PERSONAL DATA

We use your personal data to:

  • Operate our business;
  • Deliver our products and services;
  • Assist with screening process for a clinical trial;
  • Process, complete and fulfill your requested transactions;
  • Provide customer service and respond to requests or inquiries;
  • Communicate with you;
  • Tailor our marketing programs and campaigns; and
  • Provide you with newsletters, articles, alerts, announcements, invitations, and other information about clinical trials, products, brands, health topics and disease states.

We also use your personal data for data analysis, to better understand how our products and services impact you and those you care for, to track and respond to concerns, for fraud prevention and to further develop and improve our products and services. In addition, we use the information you provide to comply with our regulatory monitoring and reporting obligations including those related to adverse events, product complaints and patient safety.

For those visiting our website that provide personal data from within the European Economic Area, please see Section M of this Notice ( “Supplemental European Privacy Notice”) for additional information.

E. MARKETING

We strive to provide you with choices regarding certain personal data uses, particularly around marketing and advertising. We have established the following personal data control mechanisms:

  • Promotional material from us. We may use your Identity, Contact, Technical, Usage and Profile Data to form a view on what we think you may want or need, or what may be of interest to you. This is how we decide which products, services and offers may be relevant for you (we call this marketing).
  • Opting in. You will receive marketing communications from us if you have requested information from us and, in each case, you have opted-in to receiving that marketing.
  • Third-party marketing. We will get your express opt-in consent before we share your personal data with any company outside Voyager for marketing purposes.
  • Opting out. You can ask us or third parties to stop sending you marketing messages at any time by following the opt-out links on any marketing message sent to you. Where you opt-out of receiving these marketing messages, this will not apply to personal data provided to us as a result of a product/service purchase, warranty, product/service experience or other transactions.
  • Cookies. Most web browsers allow some control of most cookies through the browser settings. For additional information about how Voyager uses cookies and similar technologies, see our Terms of Use at the following URL: https://voyagertherapeutics.com/terms-of-use/. To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, visit www.aboutcookies.org or www.allaboutcookies.org.
  • Google Analytics. To opt out of being tracked by Google Analytics across all websites, visit https://tools.google.com/dlpage/gaoptout.

F. HOW WE SHARE YOUR PERSONAL DATA

We may share your personal data with the parties set out below for the purposes set out in Section D of this Notice (“How We Use Your Personal Data”), or Section M (“Supplemental European Privacy Notice”), as applicable.

  • Internal Third Parties: other companies or departments in Voyager that provide information technology (“IT”) and system administration services and undertake leadership reporting.
  • External Third Parties: service providers who provide IT and system administration services and data analytics. Other companies that Voyager has entered into formal collaboration and license agreements with to sponsor specific gene therapy programs, including Neurocrine Biosciences, Inc. (“Neurocrine”).
  • Other Third Parties: third parties to whom we may choose to sell, transfer, or merge parts of our business or our assets. Alternatively, we may seek to acquire other businesses or merge with them. If a change happens to our business, then the new owners may use your personal data in the same way as set out in this Notice.
  • Professional advisers: advisors (e.g., lawyers, bankers, accountants, auditors and insurers) who provide consultancy, banking, legal, insurance and accounting and payroll services.
  • Supervisory Authorities: Revenue and Customs, U.S. IRS and FDA, regulators and other authorities who require reporting of processing activities in certain circumstances.

We require all third parties to respect the security of your personal data and to treat it in accordance with applicable laws. We do not allow our third-party service providers to use your personal data for their own purposes and only permit them to process your personal data for specified purposes and in accordance with our instructions.

G. HOW WE SECURE YOUR PERSONAL DATA

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.

We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

H. HOW WE RESPOND TO DO NOT TRACK SIGNALS

Some web browsers may transmit “do-not-track” signals to websites with which the browser communicates. Websites linked to this Notice do not currently respond to these “do-not-track” signals.

I. CALIFORNIA PRIVACY RIGHTS

California Civil Code Section 1798.83 permits California residents who are individual customers of Voyager products to request certain information regarding Voyager’s disclosure of personal data to third parties for their direct marketing purposes. To make such a request, please contact us using our contact information listed in Section A of this Notice (“How to Contact Us”).

Be sure to include your name and address. You can include your email address if you want to receive a response by email. Otherwise, we will respond by postal mail within the time required by law.

J. CHILDREN

While in some instances we may collect personal data about children with the consent of a parent or guardian, such as clinical trial activities or for patient support programs, we do not otherwise knowingly solicit data from, or market to, children. If a parent or guardian becomes aware that his or her child has provided us with personal data, he or she should contact us as described in Section A of this Notice (“How to Contact Us”). We will take reasonable steps to delete such data from our database within a reasonable time.

K. LINKS TO OTHER SITES

This Notice does not address, and Voyager is not responsible for the terms of use, information or privacy practices of any other data controllers, including any data controllers operating any site or service to which our Voyager website links. The inclusion of a link on the Voyager website does not imply our endorsement of the linked site or service.

L. PRIVACY NOTICE UPDATES

Voyager may update this Notice from time to time. Please check this Notice periodically for changes. If we make any changes, the updated Notice will be posted with a revised effective date. We encourage you to periodically review this page for the latest information on our privacy practices.

M. SUPPLEMENTAL EUROPEAN PRIVACY NOTICE

European Union Regulation 2016/679 of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data (“GDPR”) require Voyager as the data controller to provide additional and different information about its data processing practices to data subjects in the European Economic Area (“EEA”). If you are a data subject within the EEA, this Supplemental European Privacy Notice applies to you in addition to the provisions above.

1. HOW WE USE YOUR PERSONAL DATA

We will only use your personal data when applicable law allows us to do so. Most commonly, we will use your personal data in the following circumstances:

  • Where we need to perform the contract that we are about to enter into or have entered into with you.
  • Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests.
  • Where we need to comply with a legal or regulatory obligation.
  • Necessary for scientific research purposes.

We may also use your personal data in the following situations, which are likely to be rare:

  • Where we need to protect your interests (or someone else’s interests).
  • Where it is needed in the public interest or for official purposes.

Generally, we do not rely on consent as a legal basis for processing your personal data other than in relation to sending direct marketing communications to you via email or text message. You have the right to withdraw consent to marketing at any time by contacting us.

We have set out below, in a table format, a description of all the ways we plan to use your personal data, and which of the legal bases we rely on to do so. We have also identified what our legitimate interests are where appropriate.

Note that we may process your personal data for more than one lawful ground depending on the specific purpose for which we are using your data. Please contact us if you need additional details about the specific legal ground that we are relying on to process your personal data where more than one ground has been set out in the table below.

Purpose/Activity

Category of personal data

Lawful basis for processing including basis of legitimate interest

To register you as a new client, contractor or employee.

(a) Identity

(b) Contact

Performance of a contract with you

To process and deliver your service or order including:

(a) Manage payments, fees and charges

(b) Collect and recover money owed to us

(a) Identity

(b) Contact

(c) Financial

(d) Transaction

(e) Marketing and Communications

(a) Performance of a contract with you

(b) Necessary for our legitimate interests

· to recover debts due to us.

To manage our relationship with you which will include:

(a) Notifying you about changes to our terms or privacy policy

(b) Asking you to leave a review or take a survey

(c) As an employee

(a) Identity

(b) Contact

(c) Profile

(d) Usage

(e) Marketing and Communications

(f) Financial

(a) Performance of a contract with you

(b) Necessary to comply with a legal obligation

(c) Necessary for our legitimate interests

  • to keep our records updated,
  • to study how customers and clients use our products/services; and,
  • to administer our employee relationships

To enable you to complete a survey

(a) Identity

(b) Contact

(c) Profile

(d) Usage

(e) Marketing and Communications

(a) Performance of a contract with you

(b) Necessary for our legitimate interests

  • to study how customers use our products/services; and
  • to develop them and grow our business.

To administer and protect our business and our intranet and website (including troubleshooting, data analysis, testing, system maintenance, support, reporting and hosting of data)

(a) Identity

(b) Contact

(c) Profile

(d) Technical

(e) Usage

(a) Necessary for our legitimate interests

  • for running our business and employee relationship,
  • provision of administration and IT services, network security,
  • to prevent fraud and
  • in the context of a business reorganisation or group restructuring exercise.

(b) Necessary to comply with a legal obligation

To deliver relevant website content and advertisements to you and measure or understand the effectiveness of the advertising we serve to you

(a) Identity

(b) Contact

(c) Profile

(d) Usage

(e) Marketing and Communications

(f) Technical

Necessary for our legitimate interests

  • to study how customers use our products/services,
  • to develop them,
  • to grow our business and
  • to inform our marketing strategy.

To use data analytics to improve our website, products/services, marketing, customer relationships and experiences

(a) Technical

(b) Usage

Necessary for our legitimate interests

  • to define types of customers for our products and services;
  • to keep our website updated and relevant;
  • to develop our business; and,
  • to inform our marketing strategy.

To make suggestions and recommendations to you about goods or services that may be of interest to you

(a) Identity

(b) Contact

(c) Technical

(d) Usage

(e) Profile

Necessary for our legitimate interests

  • to develop our products/services; and,
  • to grow our business.

To assist with the screening process for a clinical trial

(a) Identity

(b) Contact

(c) Special Categories (Health Data)

Consent

To conduct a research program

(a) Identity

(b) Contact

(c) Financial

(d) Special Categories (Health Data)

Necessary for our legitimate interests

  • to improve healthcare; and
  • to conduct and analyse the research study.

Necessary for scientific research purposes

2. CLINICAL TRIAL DATA

We undertake clinical studies within the EEA and we will use information from subjects’ medical records and other health data in order to improve healthcare. As a pharmaceutical organisation, we have a legitimate interest in using information relating to your health for research studies, when you agree to take part in a research study. Our exception to the general provision at Article 9(1) GDPR not to process special categories of data is that processing is necessary for scientific research purposes in accordance with Article 89(1) GDPR. This means that we will use your data when we act as the data controller for such studies, collected in the course of a research study, in the ways needed to conduct and analyse the research study. We may use third parties to perform some services related to our clinical trials, including operating a screening website related to a clinical trial sponsored by us. Whenever a person interested in a clinical trial uses one of these services, we will collect the necessary information after providing additional details about how we intend to process his/her data and obtain that person’s consent, as necessary. A person can choose at any time not to provide the information requested by the screening website but this may prevent you from continuing to use these services.

Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

3. CHANGE OF PURPOSE

We will only use your personal data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. If we need to use your personal data for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to do so.

Please note that we may process your personal data without your knowledge or consent, in compliance with the above rules, where this is required or permitted by applicable law.

4. INTERNATIONAL TRANSFERS OF PERSONAL DATA

We are based outside the EEA, so the processing of your personal data may involve a transfer of data outside the EEA. We do, however, have a Data Protection Officer (“DPO”) based in the EEA who is our designated representative within the EEA. Information on how to contact the DPO can be found in Section A of this Notice (“How to Contact Us”).

Whenever we transfer your personal data out of the EEA, we ensure a similar degree of protection is afforded to it by ensuring at least one of the following safeguards is implemented:

  • We will only transfer your personal data to countries that have been deemed to provide an adequate level of protection for personal data by the European Commission.
  • Where we use certain service providers, we may use specific contracts approved by the European Commission which give personal data the same protection it has in Europe.
  • Regarding transfers to the US, we are required to incorporate the model clauses in agreements for transfer provided by the European Commission in order to provide similar protection to personal data shared within Europe.

5. HOW LONG WE RETAIN YOUR PERSONAL DATA

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

In some circumstances we may anonymise your personal data (so that it can no longer be associated with you) for research or statistical purposes in which case we may use this information indefinitely without further notice to you.

6. YOUR DATA PROTECTION RIGHTS

Under certain circumstances, visitors from within the EEA have the following data protection rights:

  • access to your personal data;
  • correction of your personal data;
  • erasure of your personal data;
  • object to processing of your personal data;
  • restrict processing your personal data;
  • transfer of your personal data; and/or
  • withdraw consent to any consent that you have previously given.

If you wish to exercise any of the rights set out above, please contact our DPO. You can also contact the Supervisory Authority in the country of your residence within the EEA at the following link: https://edpb.europa.eu/about-edpb/board/members_en for advice or to make a complaint. Please be aware that your rights in relation to clinical research data may be limited.

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive. Alternatively, we may refuse to comply with your request in these circumstances.

We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.

We try to respond to all legitimate requests within one month. Occasionally it may take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.

 

Eligibility Questionnaire About the Procedure