Akouos, Inc., a wholly owned subsidiary of Eli Lilly and Company (“Akouos”), and Eli Lilly and Company (”Lilly”) recognize the importance of protecting the privacy of personal information (PI) we may receive about visitors to akouos.com or through our other online and offline services that display or refer to this Privacy Notice (“Notice”) concerning individuals with whom we interact – including, for example, patients, clinical trial participants, members of the public, regulatory authorities’ representatives, healthcare organizations’ representatives, healthcare professionals, and persons with whom we do business, such as suppliers, contractors, and consultants.
This Notice describes how Akouos collects, processes, and safeguards personal information about individuals with whom we interact. This Notice is designed to assist you in making informed decisions when using our website or interacting with us and does not replace any consent form or other privacy notice that you may separately receive in connection with Akouos’s use or sharing of personal information.
PI We Collect and How We Use It
Depending on your interactions with Akouos, we may collect the following PI:
- Full name/Alias/Signature;
- Full Date of Birth;
- Identifiable Photograph/Video/Voice/Audio/Physical Characteristics or Descriptions;
- Gender and other Demographic Information;
- Business/Professional Contact Information (e.g., title, company name, business address, business email address, business phone/fax number);
- Personal Contact Information (e.g., personal address, personal email address, personal phone/fax, personal web/internet address, family member names);
- Online identifiers that correspond to your device(s) (e.g., personal IP [Internet Protocol] address, cookies, RFID, etc.);
- Employment/Professional Job or Qualifications Information;
- Health Information;
- Biographic Information;
- Financial and Government Identifying Numbers;
- Criminal/Conviction Records (e.g., on Federal Exclusion list);
- Biometric Identifiers;
- Website Utilization and Social Media Use;
- Education Information;
- Commercial Information (e.g., purchasing, consuming history, or tendencies);
- Inferences Reflecting Preferences;
- Transactional Data (e.g., interactions with Lilly systems, audit logs, meeting minutes, speaking engagements);
- Precise Geolocation
Some of this PI may be considered sensitive under applicable laws, such as information about your health or medical diagnosis and demographic information collected in some circumstances, such as race, ethnic origin, and sexual orientation. We may process sensitive PI with your consent, or as otherwise permitted by law.
We may de-identify certain of the information described above. To the extent we maintain and use de-identified information in its de-identified form, and do not re-identify such information except as permitted by law, this de-identified information is not PI and is not subject to this Privacy Notice.
We collect PI from a number of sources, including:
- Employees, potential employees, and their family members;
- Patients and clinical/medical trial participants;
- Clinical/medical investigators and staff conducting clinical/medical research;
- Health care professionals;
- Adverse event reporters and subjects;
- Investors and shareholders
- Vendors, suppliers, and contractors;
- Business partners;
- Government officials;
- Publicly available sources;
- Akouos systems and devices; and
- Directly from you.
We process/use PI for the following purposes:
- Activities for public health and interest;
- Activities as an employer to support and fulfill our obligations to our employees;
- Research and development of our products;
- Compliance with legal or regulatory obligations (e.g., adverse event reporting, exercising or defending legal claims, financial disclosure reporting);
- Business and market research;
- Market research for our products and services;
- Study recruitment;
- Communicating information about our products, responding to requests and registration for services;
- Finance and tax activities;
- Statistical analytics;
- Event management;
- Contracting and business planning activities; and
- Administration of other legal and business processes that are in Akouos’s legitimate interest, inclusive of company record retention, safeguarding our physical and electronic workplace, and website management.
Akouos may share your PI with:
- Akouos’s employees and affiliates;
- Health care professionals;
- Vendors, suppliers, and contractors;
- Business partners; and
- Government officials (e.g., law enforcement authorities, the courts, regulatory authorities).
Where permitted by law, Akouos may also enhance or merge information, including PI, with information obtained from third parties for the same purposes shared above. PI may also be used for profiling for the same purposes shared above. You may object to profiling via automated decision making by contacting us using the information in the “How to Contact Us” section below.
You do not have to share your PI with us, but if you choose not to share your PI, we may not be able to provide you with certain information, products, or services.
In the ordinary course of business, Akouos may collect Social Security numbers to fulfill legal or regulatory obligations or for other administrative purposes. We respect the confidentiality of Social Security numbers and we avoid the unnecessary collection of them, limit access to them, and disclose them only with those third parties who are legally or contractually obligated to protect them, and as required or permitted by law.
Through this website, Akouos may:
- Collect your Name and Personal Contact Information if you opt in to receive communications (such as requests for information, responses to inquiries, newsletters, etc.). Akouos may also use this information to verify your relationship with Akouos and take other actions in order to respond to your request.
- Collect online identifiers that correspond to your device(s) in order to improve, manage and secure our websites, network systems and other assets; verify your relationship with us; understand your interests and preferences; and take other actions that may be necessary to respond to your request.
- Analyze your website usage including the date and time of your website session, geographic location, how you have navigated the website, and other information collected through our web beacons, cookies, third-party and digital advertising, analytic solutions including Google Analytics®; and social media plug-ins. This information is collected for our legitimate business purposes.
This website is not intended for or designed for individuals under the age of 18. We do not knowingly collect PI from any person under the age of 18 unless a parent or guardian provides consent.
Reasons We Share PI
We may share your PI with third parties in connection with work that they do for or with Akouos, for purposes consistent with those listed above. These third parties must agree to protect the PI and to use it only as directed by Akouos.
We may also be required to disclose your information in response to lawful information requests for PI by law enforcement authorities, the courts or regulatory authorities, including complying with national security or law enforcement requests.
In the event that Akouos may decide to reorganize or divest part or all of its business, including its information databases, through a sale, divestiture, merger, acquisition or other means of transfer, then PI may be shared with, sold, transferred, rented, licensed, or otherwise provided or made available by Akouos to third parties in connection with the contemplated transaction (without your consent or any further notice to you). In such circumstances, Akouos will seek written assurances that the PI will be protected appropriately.
Where We Transfer and Work With PI
This website is owned and operated by Akouos in the United States. However, any information collected on this website may be transferred to Akouos and Lilly affiliates, and third parties worldwide. These affiliates and third parties may in turn transmit PI to Akouos and Lilly affiliates and third parties. Some of Akouos’s and Lilly’s affiliates and other third parties may be located in countries that do not require the same level of data protection as the country you reside in. When transferring PI across country borders, Akouos and Lilly and its affiliates utilize appropriate transfer mechanisms as applicable (which may include consent, Standard Contractual Clauses, existing adequacy decisions, etc.). Nevertheless, Akouos’s and Lilly’s affiliates and third parties are required to treat PI in a manner consistent with this Notice, and Akouos’s and Lilly’s internal Privacy Policies. By using this website, you consent to the collection, storage, and processing of your PI in the United States and in any country to which we may transfer your information in the course of our business operations.
How Long We Keep PI
PI will be saved for a period of time needed to fulfill legitimate and lawful business purposes in accordance with our record retention policies and applicable laws and regulations.
How We Secure PI
We provide reasonable physical, technical, and procedural safeguards to protect PI we work with and maintain. We limit access to PI to authorized employees and third parties who need access to carry out their assigned roles and responsibilities on behalf of Akouos. Although we strive to protect the PI we work with and maintain, no security system can prevent all potential security breaches.
Your Rights and Choices
Upon verification of your identity and as applicable by law, you have the right to request information from us on how your PI is being used and with whom it is being shared. Verification information includes your full name, your contact information (postal and email address and phone number) and information related to your relationship with Akouos. In order to protect your privacy, the specific information Akouos requests may vary, depending on the sensitivity of the information. We use the information you provide to match the identifying information, if any, already maintained by Akouos. You also have the right and choice to request to see and receive a copy of the PI that we have about you, request that we correct, restrict the processing of, and/or erase/delete your PI, or in France, set expectations for the handling of your data after your death.
In limited circumstances, you may have the right to have your information transmitted to another entity or person in a machine-readable format.
There may be exceptions that apply to your request.
To exercise your rights, you or your authorized representative may submit a request to firstname.lastname@example.org or by contacting us using one of the methods listed in the Contact Us section. You may use a representative, called an “authorized agent,” to submit a request to know or a request to delete. An authorized agent means a natural person, or a business entity registered with the Secretary of State, that you have authorized to act on your behalf. In order to protect your privacy, Akouos requires you to confirm that you have provided the authorized agent permission to submit the request and you must provide the authorized agent with signed permission. “Signed” means that the written attestation, declaration, or permission has either been physically signed or provided electronically pursuant to the Uniform Electronic Transactions Act. Akouos may deny a request from an authorized agent that does not submit proof that they have been authorized to act on your behalf.
You may be entitled, in accordance with applicable law, to appeal a refusal to take action on your request. To do so, please contact us by using one of the methods listed in the How to Contact Us section. You will not be discriminated against for exercising any of your rights.
Individuals in the European Economic Area, Switzerland and the UK
If you are located in the European Economic Area (“EEA”), Switzerland, or the United Kingdom (“UK”), personal information about you may be protected by data protection laws in the EEA, Switzerland, or UK, such as the European Union General Data Protection Regulation (“GDPR”), the Swiss Federal Act on Data Protection, the UK GDPR and the UK Data Protection Act 2018 as amended and in force. Akouos will comply with these data protection laws when it processes personal information about you as described in this Notice.
When processing personal information as described in this Notice, Akouos relies on one of the following legal bases, as appropriate:
- Where you have provided your consent (in which cases, such consent can be withdrawn at any time and without giving any reason);
- Where it is necessary to comply with contractual obligations with you;
- Where the processing is necessary for our compliance with a legal obligation;
- Where the processing is necessary to protect the vital interests of an individual; or
- Where the processing is in Akouos’s legitimate interest, for example, Akouos processes data for scientific and statistical research purposes, for scientific development, for the improvement of our products and services, to provide security measures to protect its employees, contractors, patients, information, and other assets and to prevent crime (such as fraud, financial crime and theft of intellectual and industry property and to ensure the integrity of its manufacturing and other operations) or in other ways strictly necessary to carry out our business.
In addition to the above, where Akouos processes special categories of data about individuals (information about individuals’ health, ethnicity, religion, trade union membership, genetic and biometric data etc.), it shall only do so in accordance with applicable laws and regulations. For such processing Akouos relies on the following conditions:
- Where individuals provide explicit consent;
- Where required for rights and obligations related to employment;
- Where required for vital interests of any individual;
- Where processing is necessary for the purposes of provision of healthcare or occupational medicine, pursuant to a contract with a health care professional; and
- Where processing is necessary for scientific research.
Akouos is headquartered in the U.S. and as a result, personal information about you will be processed by Akouos in the U.S. Akouos may contract with service providers to process personal information on Akouos’s behalf; these service providers may be located outside of the EEA, Switzerland, and UK. Data protection laws in the U.S. or other countries may not offer you the same protections as the laws of the country in which you are residing when personal information about you is collected.
Where Akouos processes personal information in countries that may not provide the same level of data protection as in the country in which you are residing, Akouos will implement reasonable and appropriate legal, technical, and organizational security measures with the aim to ensure the security of the processing and in particular to protect your personal data from unauthorized access, use or disclosure. In the absence of an adequacy decision adopted by the European Commission, Akouos will implement appropriate data transfer mechanisms (such as the EU Standard Contractual Clauses (SCCs)) for any cross-border data transfers from your country to a third party (controller or processor) located in a third country with the aim to secure such transfers and achieve an adequate level of data protection.
Data protection laws in the EEA, Switzerland, and UK may provide you the following rights with respect to personal information processed by Akouos:
- To withdraw consent at any time, if we are processing personal information about you on the basis of consent;
- To access the personal information that Akouos has about you;
- To request that Akouos rectify or erase personal information about you;
- To request that Akouos restrict the way it processes personal information about you;
- To object to the way Akouos processes personal information about you;
- To ask Akouos to transfer personal information about you to you or someone else; and
- To lodge a complaint with a data protection authority in the EEA, Switzerland, or UK; You can find the competent supervisory authority here.
Akouos’s ability or obligation to comply with your requests may be limited by applicable law. Akouos will require appropriate evidence of your identity or to be provided with additional relevant information based on your relationship with us before we are able to act on your request when the information we have is insufficient to accommodate your request. To request to exercise one of these rights if you are located in the EEA, Switzerland, or UK, please contact our Data Privacy Office by email us at email@example.com.
As Akouos is located outside the EU, it has appointed ALG Manousakis Law Firm as its Representative in the European Union for data protection purposes which can be contacted at: 16 Laodikias Str. | 11528 | Athens | Greece | firstname.lastname@example.org. Akouos has also appointed Ametros Group Ltd. as its Representative in the United Kingdom for data protection purposes, which can be contacted at: Lakeside Offices |Thorn Business Park | Hereford |Herefordshire | HR2 6JT | United Kingdom | email@example.com.
California Privacy Disclosures
California residents who have an established business relationship with Akouos may have the right to request information regarding Akouos’s disclosure of certain PI to third parties for their direct marketing purposes. To make a request for such information, you may contact us using the information in the “How to Contact Us” section below.
California law entitles California residents to certain rights with regard to their PI. Those rights have been incorporated into this Privacy Statement under “Your Rights and Choices” section above.
Sale and Sharing of Personal Information
Akouos does not sell PI about California consumers that are protected under the California Consumer Privacy Act (“CCPA”) to third parties or share such PI with third parties for targeted or cross-context behavioral advertising, as those terms are defined by applicable law. When Akouos permits third parties to collect PI through our websites or discloses PI to third parties, Akouos is doing so pursuant to various exceptions to the opt-out rights provided for under California law.
Sensitive Personal Information
Akouos does not use or disclose your sensitive PI except for limited purposes that are authorized by law. For example, Akouos may collect information about your health or medical diagnosis to provide you specific functionality or products or services that you have requested. California law does not afford you rights to limit the use or disclosure of sensitive PI for these purposes, although we may nonetheless ask for your consent or provide you choices about how we use this information depending on the relevant context.
How to Contact Us
If you have questions or concerns regarding the way in which your personal information has been used or want to obtain more information about our privacy practices, please contact our Data Privacy Office by email at firstname.lastname@example.org or by calling (857) 410-1818.
How to Submit a Complaint
If you wish to raise a complaint on how we have handled your PI, please contact our Data Privacy Office by email at email@example.com and they will investigate the matter.
If you are not satisfied with our response or believe we are not processing your PI in accordance with the law, you can register a complaint with a relevant regulatory authority (e.g., a Data Protection Authority or Attorney General).
Links to Third-Party Websites
As a convenience to our visitors, this website may contain links to other sites owned and operated by third parties that we believe may offer useful information. The policies and procedures we describe here do not apply to those sites. We are not responsible for the collection or use of PI at any third-party sites. Therefore, we disclaim any liability for any third party’s use of PI obtained through using the third-party website. We suggest contacting those sites directly for information on their privacy, security, data collection and distribution policies.
Changes to Our Privacy Practices
We may update this Notice from time to time. When we do update it, for your convenience, we will make the updated statement available on this page. We will always handle your PI in accordance with the Notice in effect at the time it was collected unless we provide you with the new notice and/or obtain your consent, as appropriate.
Last Updated: December 21, 2022
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