Effective/Last Revised: August 1, 2020
Kiniksa Pharmaceuticals, Ltd. (“Kiniksa,” “we” or “us”) respects the privacy rights of individuals with regard to their personal data. This Policy describes the categories of personal data we may collect from you and how we may collect, use, and share that data. It also describes our privacy practices to safeguard your personal data in compliance with applicable data protection laws.
If you have any questions concerning Kiniksa’s privacy practices or wish to access or correct personal data that Kiniksa has collected from you, please contact us as described under the heading “HOW TO CONTACT US”.
Kiniksa may update this Policy from time to time, in which case we will post an updated Policy with a revised effective date. We encourage you to review this page periodically for the latest information about our privacy practices.
PERSONAL DATA WE MAY COLLECT ABOUT YOU
We may collect, use, store, transfer and share different categories of personal data about you depending on the nature of Kiniksa’s relationship with you and the requirements of applicable law, including the different categories of personal data set forth below, which we have grouped together as follows:
- Identity Data. Such as your first name, maiden name, last name, username or similar identifier, marital status, title, date of birth, social security number and gender.
- Contact Data. Such as your billing address, delivery address, email address and telephone numbers.
- Profile Data. Such as your username and password on our website, the types of information requested, purchases or orders made by you, your preferences, and feedback and survey responses.
- Technical Data. Such as 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 you use to access our website
- Usage Data. Such as information about how you use our website, products and services.
- Marketing and Communications Data. Such as your preferences in receiving product, program, marketing or other information from us and our third parties and your communication preferences.
- Transaction Data. Such as details about payments to and from you and other details of products and services you have purchased from us.
- Financial Data. Such as your bank account, payment card details, insurance information and payroll data.
- Special Categories of Personal Data. Such as details about your race or ethnicity, or information about your health (including health-related personal data that Kiniksa or its agent may use to determine your eligibility for clinical research or to conduct a clinical trial) and genetic and biometric data.
HOW WE MAY COLLECT INFORMATION ABOUT YOU
You may give us your identity, contact and financial data by filling in forms or by corresponding with us by mail, phone, and e-mail or otherwise. This includes personal data you provide when you:
- create an account on our website;
- subscribe to our e-mail notifications, services, or publications;
- request scientific, product, program or marketing materials to be sent to you;
- enter information into a survey;
- provides us feedback;
- provide unsolicited information to us;
- apply for employment with us or when you become an employee; or
- express interest in participating in our clinical trials or other studies and research programs.
You also may provide information to be used, published or displayed (hereinafter, “posted“) on public areas of our Websites, or to be transmitted to other users of our Websites (collectively, “User-Generated Information“). When You provide User-Generated Information, you do so at your own risk.
Although in some cases you may be able to establish certain privacy settings for your User-Generated Information that is posted on our Websites, please be aware that no security measures are perfect or impenetrable.
Additionally, we cannot control the actions of other users of our Websites with whom you may choose to share your User-Generated Information. Therefore, we cannot and do not guarantee that your User-Generated Information will not be viewed by unauthorized persons.
As you interact with our website or intranet, we may automatically collect technical data about your equipment, browsing actions and patterns. We collect this data by using cookies and other similar technologies.
- Cookies. Cookies are small text files that are placed on your computer or mobile device in order to identify your web browser and the activities of your computer or mobile device when using our website. Cookies are used to personalize your experience, to assist you in using the website (such as saving time by not having to re-enter your name each time you use the website), and to allow us to statistically monitor how you are using the website to help us improve our products and services.
You do not have to accept cookies to use our website. Although most browsers are initially set to accept cookies, you may reset your browser to notify you when you receive a cookie or to reject cookies generally. Most browsers offer instructions on how to do so in the “Help” section of the toolbar. However, if you reject cookies, certain features or resources of the website may not work properly and you may experience some loss of convenience.
- Action Tags. Action tags, also known as web beacons or gif tags, are a web technology used to help track website usage information, such as how many times a specific page has been viewed. Action tags are invisible to you, and accessing any online service, including advertisements, from the website may result in the creation of action tags.
By using cookies and action tags together, we are able to gain valuable information to improve our website and other services and to measure the effectiveness of our marketing efforts.
How We Respond to Do-Not-Track Signals
Third Parties or Publicly Available Sources
We may receive different categories of personal data about you (as described under the heading “PERSONAL DATA WE MAY COLLECT ABOUT YOU”) from various third parties and public sources, including as set forth below:
- Technical data from analytics providers such as Adobe, 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 availably sources; and
- Special categories of data including health data from entities such as those assisting us with our clinical trials and other studies and research programs.
HOW WE MAY USE YOUR PERSONAL DATA
We may use your personal data in order to:
- Operate our business;
- Deliver information, products and services;
- Process, complete and fulfill your requests and transactions;
- Communicate with you;
- Provide customer service and respond to your inquiries;
- Screen for clinical trials or other studies and research program eligibility;
- Conduct scientific and market research and publish related results;
- Tailor our research, programs and marketing campaigns; and
- Provide you with newsletters, articles, alerts, announcements, invitations, and other information about science, research, products, brands, health topics and disease states.
We also may 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 research, programs, products and services. In addition, we may 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.
MARKETING AND OTHER INFORMATION
We strive to provide you with choices regarding certain personal data uses, particularly around marketing and advertising, as well as receiving other information. We have established the following personal data control mechanisms:
- Scientific, Medical, Program and Marketing Materials. We may use your identity, contact, technical, usage, and profile data to form a view on what we believe you may want or need, or what may be of interest to you. This helps us to decide which programs, products, services, information and promotional efforts may be relevant for you.
- Opting-In. You will receive scientific, medical, program or marketing communications from us if you have requested this information from us and, in each case, you have opted-in to receiving these communications.
- Opting-Out. You can ask us or third parties who we control to stop sending you scientific, medical, program or marketing communications at any time by following the opt-out links on any marketing message sent to you. Opting-out of receiving these communications will not apply with respect to personal data provided to us as a result of products or services purchased, warranty information, product or service experience, or other transactions.
- Third-Parties. We may use third parties to assist us in providing you information but will obtain your express opt-in consent before we share your personal data with any third party for these purposes.
- Google Analytics. To opt out of being tracked by Google Analytics across all websites, visit https://tools.google.com/dlpage/gaoptout.
HOW WE MAY SHARE YOUR PERSONAL DATA
We may share your personal data with other parties who we have grouped together as follows (for the purposes set forth under the heading “HOW WE MAY USE YOUR PERSONAL DATA”):
- Internal Parties. Such as other subsidiaries, affiliates or departments within the broader Kiniksa organization that provide services to other parts of the organization, or for information technology and system administration services, or who undertake reporting.
- External Third Parties. Such as service providers that provide information technology and system administration services and data analytics, or third parties who provide services to support a clinical trial or other study or research program sponsored by Kiniksa, or marketing activities as described under “MARKETING AND OTHER INFORMATION”.
- Other Third Parties. Such as third parties in connection with the potential sale or transfer of all or a portion of our business or assets or with whom we may choose to merge, or from whom we may seek to acquire all or a portion of their business or assets. If a such change happens to our business and results in a change in ownership of all or a portion of such business or assets, the new owners may use your personal data as set out in this Policy.
- Professional Advisors. Such as advisors (e.g., lawyers, bankers, auditors and insurers) who provide advisory and related services to us, including consultancy, banking, legal, accounting, insurance, and payroll services.
- Authorities. Such as revenue and customs, Internal Revenue Service (IRS), U.S. Food and Drug Administration (FDA), state and federal regulators and other authorities who require reporting of processing activities or data in certain circumstances.
We require all third parties to respect the security of your personal data and to treat it in accordance with applicable law. 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.
HOW WE SECURE YOUR PERSONAL DATA
We have security measures designed to safeguard your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. We limit access to your personal data to those employees, agents, contractors and other third parties that have a business need to know such information and are subject to a duty of confidentiality. Such employees, agents, contractors and other third parties may only process your personal data for specified purposes in accordance with our instructions.
We have procedures with respect to suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.
We do not knowingly solicit data from, or market to, children and do not collect personal data about children, except in certain instances with the express consent of a parent or legal guardian. If a parent or legal guardian becomes aware that his or her child has provided us with personal data, he or she should contact us as described under the heading “HOW TO CONTACT US”. We will take reasonable steps to delete such data from our database within a reasonable time.
LINKS TO OTHER SITES
CALIFORNIA PRIVACY RIGHTS
If you reside in California, please read this section for additional details about how we may collect, use, and disclose information about you, as well as your rights under the California Consumer Privacy Act (or “CCPA”) (California Civil Code Section 1798.100 et seq.).
We may collect information that identifies, relates to, describes, references, is capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular person or device. Personal information does not include publicly available information from government records, de-identified or aggregated consumer information, and information excluded from the CCPA’s scope. For more information about the type of personal information we may have collected about you, please see the “PERSONAL DATA WE MAY COLLECT ABOUT YOU” section of this Policy. For more information about how we may use and share your information for business purposes, please see the “HOW WE MAY USE YOUR PERSONAL DATA” and “HOW WE MAY SHARE YOUR PERSONAL DATA” sections of this Policy. Please note that in the past 12 months, and currently, we do not sell your personal information.
The CCPA provides consumers (i.e., California residents) with specific rights (listed below and subsequently referred to as “California Privacy Rights”), subject to some limitations and the verification of their identity, regarding their personal information:
- Consumers have the right to request access to the specific pieces of personal information we have collected, disclosed or sold about them in the last 12 months, including the categories of information, sources and business purposes of collection, as well as the categories of third parties to whom we have disclosed or shared the personal information.
- Consumers have the right to request deletion of their personal information (subject to certain exceptions).
- Consumers have the right to opt-out of the sale of their personal information, though we do not sell personal information.
- Consumers have the right to receive equal service and price and not be discriminated against for exercising their privacy rights under the CCPA.
In order for us to process a request for you to exercise your California Privacy Rights, we will first verify your identity. Please submit your requests by contacting us pursuant to the “HOW TO CONTACT US” section of this Policy.
You may designate an authorized agent to exercise your California Privacy Rights on your behalf in accordance with the CCPA. We may require that you provide the authorized agent with written permission to act on your behalf and that the authorized agent verify his or her identity directly with us. We do not charge a fee to process or respond to your verifiable request unless it is excessive, repetitive, or manifestly unfounded. If we determine that the request warrants a fee, we will tell you why we made that decision and provide you with a cost estimate before completing your request. When you submit a request to exercise your California Privacy Rights, we will do our best to respond to your request as soon as possible, and, in any event, in accordance with the timeframes established by the CCPA and its regulations.
California Civil Code Section 1798.83 permits California residents who are individual customers of Kiniksa products to request certain information regarding its disclosure of personal data to third parties for their direct marketing purposes. To make such a request, please contact us as described under the heading “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.
HOW TO CONTACT US
c/o Kiniksa Pharmaceuticals Corp.
Attention: Kiniksa Data Privacy and Legal
100 Hayden Ave
Lexington, MA 02421
Effective/Last Revised: July 10, 2020
HOW WE USE YOUR PERSONAL DATA
We will only use your personal data when the law allows us to so. Most commonly, we will use your personal data in the following circumstances:
- We need to perform the contract we are about to enter into or have entered into with you.
- It is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests.
- We need to comply with a legal or regulatory obligation.
- It is necessary for scientific research purposes.
We may also use your personal data in the following situations, which are likely to be rare:
- We need to protect your interests (or someone else’s interests).
- It is needed in the public interest or for official purposes.
We may also rely on consent as a legal basis for processing your personal data in certain circumstances, like 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 many of 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 we are relying on to process your personal data.
|Purpose/Activity||Category of personal data||Lawful basis for processing including basis of legitimate interest|
|To register you as a new customer, contractor or employee.||(a) Identity(b) Contact||Performance of a contract with you|
|To process and deliver your service or product 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 intereststo recover debts due to us|
|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 intereststo study how customers use our products/services; andto 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 interestsfor running our business and employee relationships;provision of administration and IT services, network security;to prevent fraud; andin 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 intereststo study how customers use our products/services;to develop them;to grow our business; andto 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 intereststo define types of customers for our products and services;to keep our website updated and relevant;to develop our business; andto 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 intereststo develop our products/services; andto grow our business|
|To screen you for clinical study eligibility||(a) Identity(b) Contact(c) Special Categories (Health Data)||Consent|
|To conduct a clinical study||(a) Identity(b) Contact(c) Financial(d) Special Categories (Health Data)||Necessary for our legitimate intereststo improve healthcare; andto conduct and analyze the research study.Necessary for scientific research purposes|
CLINICAL TRIAL DATA
We undertake studies within the EEA and we will use information from subjects’ medical records and other health data in order to improve healthcare. We may use third parties to perform some services related to our clinical trials, including operating a screening website to determine whether interested individuals are eligible to participate in a clinical study sponsored by Kiniksa. Whenever a person interested in participating in a clinical study uses one of these services, we will collect the necessary information after providing additional details about how we will process his/her data and obtain that person’s express consent, as necessary. A person can choose at any time not to provide the information requested by the screening website but this may prevent him/her from continuing to use these services.
If a person is determined to be eligible for a clinical study and decides to participate, important information (contained in what is known as an informed consent form) is reviewed with each patient by a study professional at the study site. Each patient must read and sign this informed consent form, which describes possible health risks and possible benefits of participating in the study, as well as what personal data will be collected in the study and who is able to use or disclose any personal information, before enrolling. Anyone can decline/unenroll to participate in a study at any time.
As a biopharmaceutical 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 principle not to process special categories of data is that processing is necessary for scientific research purposes. This means that we will use your health data that we collect during a research study when we act as the data controller for such studies in the ways needed to conduct and analyse the research study. 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 personal data necessary to achieve our purpose(s).
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 new legal basis.
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 law.
INTERNATIONAL TRANSFERS OF PERSONAL DATA
We are based outside the European Economic Area, so the processing of your personal data may involve a transfer of data outside the EEA. Information on how to contact the us can be found under the heading “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.
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.
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 of processing your personal data;
- transfer of your personal data; and
- withdraw consent to any consent that you have previously given.
If you wish to exercise any of the rights set out above, information on how to contact the us can be found under the heading “HOW TO CONTACT US”. You can also contact the Supervisory Authority in the country of your residence within the EU at this link 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 or refuse to comply with your request if it is clearly unfounded, repetitive or excessive.
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.