Click here to review Amicus Therapeutics Privacy Notice.
PERSONAL DATA PROCESSED
Amicus is a biopharmaceutical company that develops, produces and markets therapies to treat a range of devastating rare and orphan diseases. In doing so, Amicus may receive personal information from or concerning individuals in the European Economic Area (EEA) and Switzerland from its: (1) clinical research subjects; (2) clinical investigators and staff conducting clinical and medical research; (3) potential clinical trial and post‐market patients and their family members/caregivers; (3) adverse event reporters and subjects; (4) consumers; (5) investors and shareholders; (6) medical and healthcare professionals; (7) customers; and (8) vendors, suppliers, contractors, and business partners; and (9) government officials.
PURPOSES OF PROCESSING
Amicus collects, uses and retains personal information from individuals located in EEA member countries, the United Kingdom (UK) and Switzerland:
a) for the purposes of recruitment of potential clinical research participants, investigators, and other research personnel;
b) for customer relationship management, customer service, social engagement, community building and data analytics purposes;
c) for the purposes of recruitment of personnel and contractors and for the purpose of execution, administration and performance of the employment or contract relationship, and
d) for the purpose of marketing and business development and other business and promotional activities.
DATA PRIVACY FRAMEWORK PRINCIPLES
Amicus will not sell or provide your personal information to any third party without notice. When Amicus directly collects personal information from individuals located in EEA member countries, the United Kingdom (UK) and Switzerland, it, as explained below, advises you about the purposes for which the information is collected and used, and your ability to limit the use and disclosure of such information, and how to contact Amicus. Amicus provides this notice in clear and conspicuous language, either through this privacy statement or other means such as informed consent forms, statements on Amicus’s website and other disclosures.
Subject to the exceptions outlined in the “Product Safety and Efficacy Monitoring” section below, and as otherwise permitted by applicable law, Amicus does not use or intend to use your personal information for any purpose (other than that for which it was originally collected) without your consent.
Amicus does not disclose personal information to third parties for purposes that are incompatible with the purposes for which it was originally collected. Amicus may occasionally transfer personal information to third parties who act for or on behalf of Amicus, or in connection with the business of Amicus, for further processing consistent with purposes for which the data were originally collected. Where disclosure of personal information to a third party is likely or necessary, further notice may be provided, where appropriate, at such collection points as to the intended use of the data.
3. ONWARD TRANSFERS
To facilitate the above purposes, personal information will be shared with third parties which Amicus has chosen to outsource work, such as study sites, investigators, consultants, business partners, third party service providers and competent authorities and regulatory bodies. Amicus will endeavor to only transfer personal information to a third party where such third party has given written assurances that it provides at least the same level of privacy protection as required by the Data Privacy Framework (“DPF”) Principles and this Policy and will notify Amicus if it makes a determination, it can no longer meet this obligation.
With respect to transfers of individuals’ Personal Data to third-party processors, Amicus (i) enters into a contract with each relevant processor, (ii) transfers Personal Data to each such processor only for limited and specified purposes, (iii) ascertains that the processor is obligated to provide the Personal Data with at least the same level of privacy protection as is required by the DPF Principles, (iv) takes reasonable and appropriate steps to ensure that the processor effectively processes the Personal Data in a manner consistent with Amicus’s obligations under the DPF Principles, (v) requires the processor to notify Amicus if the processor determines that it can no longer meet its obligation to provide the same level of protection as is required by the DPF Principles, (vi) upon notice, including under (v) above, takes reasonable and appropriate steps to stop and remediate unauthorized processing of the Personal Data by the processor, and (vii) provides a summary or representative copy of the relevant privacy provisions of the processor contract to the Department of Commerce, upon request.
In certain circumstances, Amicus shall remain liable if its agent processes such personal information in a manner inconsistent with the Principles, unless Amicus proves that it is not responsible for the event giving rise to the damage.
Amicus may be required to disclose personal information received from EEA member countries, the United Kingdom and Switzerland in reliance on the DPF in response to lawful requests by U.S. public authorities and governmental bodies, including to meet national security or law enforcement requirements.
4. RIGHTS TO ACCESS, TO LIMIT USE, AND TO LIMIT DISCLOSURE
5. PRODUCT SAFETY AND EFFICACY MONITORING
The Notice, Choice, Onward Transfer and Access Principles outlined above do not apply to Amicus’s product safety and efficacy monitoring activities, including the reporting of adverse events and the tracking of patients or subjects using certain medicines or medical devices to the extent that the adherence to these principles interferes with compliance with regulatory requirements, including disclosures to agencies, such as the U.S. Food and Drug Administration.
Amicus takes all appropriate and reasonable measures to protect the personal data covered by this Data Privacy Framework Policy from loss, misuse and unauthorized access, disclosure, alteration and destruction, taking into account the nature of personal information and the risks involved in the processing in accordance with the Data Privacy Framework.
7. INQUIRIES OR COMPLAINTS
In compliance with the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF and the Swiss-U.S. DPF}, Amicus commits to resolve DPF Principles-related complaints about our collection and use of your personal information. EU, UK and Swiss individuals with inquiries or complaints regarding our handling of personal data received in reliance on the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF and the Swiss-U.S. DPF should first contact Amicus at: firstname.lastname@example.org.
In compliance with the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF and the Swiss-U.S. DPF, Amicus commits to refer unresolved complaints concerning our handling of personal data received in reliance on the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF and the Swiss-U.S. DPF to BBB National Programs, an alternative dispute resolution provider located in the United States and operated by the Council of Better Business Bureaus. If you do not receive timely acknowledgment of your DPF Principles-related complaint from us, or if we have not addressed your DPF Principles-related complaint to your satisfaction, please visit BBB National Programs at https://bbbprograms.org/programs/all-programs/dpf-consumers for more information or to file a complaint. The services of BBB National Programs are provided at no cost to you.
Human Resources Data:
In compliance with the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF and the Swiss-U.S. DPF, Amicus commits to cooperate and comply respectively with the advice of the panel established by the EU data protection authorities (DPAs) and the UK Information Commissioner’s Office (ICO) and the Gibraltar Regulatory Authority (GRA) and the Swiss Federal Data Protection and Information Commissioner (FDPIC) with regard to unresolved complaints concerning our handling of human resources data received in reliance on the EU-U.S. DPF and the UK Extension to the EU-U.S. DPF and the Swiss-U.S. DPF in the context of the employment relationship.
Complaints related to human resources data should not be addressed to BBB National Programs.
8. INVESTIGATION AND ENFORCEMENT
The Federal Trade Commission has jurisdiction over Amicus’s compliance with the EU-U.S. Data Privacy Framework (EU-U.S. DPF) and the UK Extension to the EU-U.S. DPF, and the Swiss-U.S. Data Privacy Framework (Swiss-U.S. DPF).
Under certain conditions, more fully described on the Data Privacy Framework website at https://www.dataprivacyframework.gov/s/article/ANNEX-I-introduction-dpf?tabset-35584=2 ,you may invoke binding arbitration for complaints regarding DPF compliance not resolved by any of the other DPF mechanisms.
10. HOW TO CONTACT US:
Data Privacy Officer
Amicus Therapeutics, Inc.
47 Hulfish Street,
Princeton, NJ 08542
Data Privacy Officer
Amicus Therapeutics UK LTD
One Globeside Park Fieldhouse Lane,
Marlow, 7SL 1HZ
Buckinghamshire, United Kingdom
This Policy may be reviewed and amended from time to time, without advance notice, to ensure that an appropriate level of protection for personal information is maintained. All amendments will be posted on this website. Please check back periodically for updates to this Policy.