Data privacy and security are a priority at Coimbra Genomics. We understand how important it is to keep your information secure and confidential. This Data Privacy Policy describes the types of data that are collected and how the data is used, maintained, protected and under which condition it is disclosed to third party Partners when using Elsie Services. br />

 

We are committed to protecting your information through our compliance with this Data Privacy Policy. By accessing or using Elsie Services, you accept our practices described in this Data Privacy Policy and with data privacy legal requirements. If you do not agree with our practices and policies, you can choose not to access or use our Elsie Services.

Data Collection and Types of Data

Elsie Services can be used by Physicians or other previously-authorised staff members working in the context of the same Healthcare Unit under professional confidentiality duties. Access to Elsie Services is only provided after a successful registration process that includes a medical license verification process. Patients can access Elsie’s services through their Elsie registered Physician. In order to access the Elsie online platform services, different types of data are collected.

 

Account Information

  • Multiple information items are collected and managed to enable Elsie Services. In general, this information includes name, email, address (including street address, locality, postal code and country), password and a private Elsie account key.
  • Physician-specific information. In addition to the general information captured for all accounts, Elsie stores: associated healthcare unit, medical license number and preferred speciality.
  • Patient-specific information. In addition to the general information captured for all accounts, Elsie stores date of birth, biological gender, phone number, and clinical and genetic information. Patient-specific information is collected only when using Elsie services and upon the patients’ explicit consent.
    • Elsie Services are not intended for anyone under 18 years of age. For patients under 18 years of age, explicit consent must be given by legal guardian or tutor.
  • Automated data collection will capture records and copies of any correspondence (digital or analogue) with you and details of any transactions you perform while using Elsie Services. 

Clinical Information

This information may include demographic data such as personal and family medical history, age, physical features such as eye colour, behavioural information such as exercise habits, or self-declared ethnicity. Clinical data also includes all reports containing clinical information or clinical decision support information, obtained through the access to Elsie Services.

Genetic Information

This information includes the genetic information generated after the collection of a biological sample as part of the process of requesting a Genetic Test from one of our Partners or a Genome Query through the Elsie platform. In connection with the Elsie Services, Coimbra Genomics collects, processes and stores this Genetic Information in an anonymous, private and secure location.

Computer, Device and Browsing Information

As you interact with Elsie Services online (including the main Elsie website, the Elsie ordering platform and additional tools), we use automatic data collection technologies to collect certain information about your equipment, browsing actions and usage patterns. This data may include details like these:

  • Details of your visits to Elsie, including the resources that you access and use on the Services;
  • Information about your computer or device and internet connection, which could include: your IP address or other device ID, your operating system and your browser or device type.

We collect this information to improve Elsie Services' performance. It will also helps us deliver better and more personalised features to you by enabling us to recognise you when you return to our Services, by storing information about your preferences and customising our Services according to your individual interests.

The technologies we use for this automatic data collection may include cookies. You may refuse to accept browser cookies through your browser settings. However, if you select this setting, you may be unable to access certain parts of our Services. Unless you set your browser to refuse cookies, our system may issue cookies when you direct your browser to our Services.

Data Usage & Processing Purposes

Except as otherwise described in this Policy, we do not share any Account Information, Clinical Information or Genetic Data with third parties without the data owner’s explicit consent.

Coimbra Genomics will use the data collected and stored on Elsie platform only as described in this Data Privacy Policy.

Physicians, and any healthcare practitioners working under their supervision, with an active Elsie account will have full access to their patient’s personal, clinical and genetic information stored on Elsie. The Physician using the Elsie services is responsible for all the information included in the genetic test orders and forwarded from Elsie to a Laboratory Partner.  

The type and amount of personal information required for ordering a genetic test is determined by the Laboratory Partner.  Information that has been shared with a Laboratory Partner based on collected consents will be subject to that Laboratory Partner’s privacy policy. 

According to the definitions in Article 4(7) of the General Data Protection Regulation (GDPR) Regulation EU 2016/69, Coimbra Genomics is the data Controller of all personal data collected and stored on Elsie, whereas Physicians (and other healthcare practitioners with direct access to patient’s personal data) and Laboratory Partners act as data Processors of the data shared by Coimbra Genomics following Patient’s explicit consent for specific data processing activities.

Following the termination of the retention periods of patients’ clinical and genetic data set forth below, such data will continue to be kept by CBRA in an irreversible anonymized manner, and processed exclusively for research purposes. Once as from the date of termination of the retention periods the data will be irreversibly anonymized, it will not fit within the concept of personal data and therefore the underlying legal requirements on protection of personal data will not apply

Provide and Improve Elsie Services

We primarily use your information to present and provide you Elsie Services. This includes the following:

  • providing you appropriate search results and personalised content, notably by means of genetic profiling for diagnosis purposes and to support the Physician´s decision on the therapy to apply;
  • providing the appropriate search results and personalised content in relation to your genetic profile in order to trace genetic trends that may enable the support to Physicians’ decision on health matters of your relatives;
  • processing your purchases;
  • verifying your identity;
  • recognising you when you return to Elsie;
  • providing you notices about your account;
  • notifying you about updates or changes to our Services or any services we offer or provide through it; and
  • providing you with information or services that you otherwise request from us.

To improve our Services or to develop new products and services, we may use your information as follows:

  • to track your usage of our Services;
  • to administer a survey;
  • to perform quality control and quality improvement activities; and
  • to conduct data analysis about our audience size and usage trends.

Patient Consent

With explicit consent from patients, as described in Elsie Terms of Service, we do the following:

  • collect and process personal samples, blood or saliva, associated with the purchase of a genetic test through our Services;
  • store the patient’s resulting Genetic Information and Clinical Information;
  • share relevant Account Information, Clinical Information or Genetic Information with a Partner to support Elsie Services.

Clinical and Genetic Information

After the patient’s explicit consent, and for each use of our Services, clinical and/or genetic information will be shared with one or multiple partners allowing them to complete their offering. Once these data are shared with Partners, the Partner’s own privacy policy will govern the Partner’s collection, use, processing, storage, disclosure and transfer of Clinical and Genetic Information. Patients should be encouraged to review the Partner’s privacy policy with care before using Elsie’s Services. The Partner, and not Coimbra Genomics, is responsible for maintaining the privacy and confidentiality of any Clinical or Genetic Information, whose sharing between Elsie and Partner was previously authorised by the patient, once the minimal requested information leaves Elsie.

Marketing and Ad Targeting

We do not use any collected data, from Account Information to Computer Information, to track user behaviour across website, to perform or change marketing campaigns, or to serve targeted ads. Likewise, we do not deliver, and will not deliver, any kind of advertising in Elsie Services.

Data Storage

Providing and maintaining Elsie Services requires the storage of collected data in multiple private formats and locations. The storage conditions of the data collected will vary depending on the type of data. All data and servers operate in a virtual cloud environment, which uses dedicated hardware in secure facilities. CBRA resorts to cloud storage services provided by external providers, that act as processors within the data storage operations performed by CBRA. Elsie Services are provided through servers in Frankfurt (Germany).

Account Information

Account and demographic data will be stored in Elsie’s User Database for a period of 50 years. This information is kept exclusively to allow Physician identification upon login on Elsie platform and Patient identification in the scope of using Elsie Services.

Clinical Information

Clinical data of patients are stored along with account data in Elsie’s User Database and adopt the same strict policies. Thus, patient’s Clinical Data will be stored in Elsie’s User Database to the benefit of the patients themselves or their relatives, for a period of up to 50 years following the date of upload of the first genetic test results in Elsie platform with reference to the patient’s account and in accordance with the applicable laws and regulations, notably on health and genetic information databases and with the applicable ethical principles. Thereafter, clinical and genetic data may only be stored and used by Coimbra Genomics on an irreversible anonymized manner so that it can be used collectively and anonymously for research purposes.

Genetic Information

Genetic data will be stored in Elsie’s anonymous Genome Database.

The Patient’s Genetic Information will be associated with his Clinical data although the Genetic Data will be kept in an anonymized manner. Thus, Patients’ Genetic Data will be stored in Elsie’s anonymous Genome Database to the benefit of the patients themselves or their relatives, for a period of up to 50 years following the date of the upload of the first genetic test results in Elsie platform with reference to the patient’s account, and in accordance with the applicable laws and regulations, notably on health and genetic information databases and with the applicable ethical principles.

The Patient’s Clinical Information will be anonymously associated with his Genetic Data for Research Purposes. This data will be kept in Elsie for up to 50 years following the retention period specified above in relation to the use of genetic data for diagnosis / therapy decision making support.

Data Access & Modification

You may contact Elsie Legal Support to request access to, correct or remove any personal information (from you or from related patients) that you have provided to us. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect. Information that has already been de-identified and/or aggregated (including Aggregated Genetic Information) may not be retrievable or traced back for correction or removal from any database.

Elsie Legal Support contacts are the following:

  • Email: legal@coimbra-genomics.com
  • Phone: +351 308 808 968 

Account Closure

You may also contact Elsie Legal Support to request the closure of your account or to remove patient’s data from Elsie’s records. By closing an Elsie account, access will be forfeited to any Elsie Services, including access to Partner results or patient information. After closing an Elsie account, we retain some Account Information in the account related purchase history. This enables us to provide ongoing support regarding prior purchases, and is also necessary for accounting, auditing and compliance purposes. We may also retain backup copies and archival files of collected information to satisfy legal obligations or regulatory requirements, including those set by the General Data Protection Regulation (GDPR). However, we will not share any information with any Partner or third party, except for information that has already been shared before after consent.

Information from patients that has been shared with a Partner with their express consent will be subject to such Partner’s privacy policy. On account closure, Elsie will inform all Partners to whom data was shared of the closure, but we cannot guarantee that any Partner will remove, de-identify or delete information. You can request such removal, de-identification or deletion directly from the Partner.

Data Sharing

Elsie will only share Account Information, Clinical Information and Genetic Information with selected Partners only after you have authorised us to do so as part of using Elsie Services. We will share the Clinical Information and Genetic Information needed for the Partner to complete their Services and improve them over time. We enter into a written agreement with each Partner that requires the Partner to do the following:

  • maintain the confidentiality and security of the Account Information, Clinical Information Genetic Information shared with them; and
  • use the Account Information, Clinical Information Genetic Information only for the specific purposes that patients have authorised.

We may disclose Account Information and information about your usage of our Services other than your Clinical Information or Genetic Information only in the following circumstances:

  • To contractors, service providers and other third party vendors we use to support our business, and who are bound by contractual obligations to keep personal information confidential and use it only for the purposes for which we disclose it to them.
  • If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of Elsie, our users or others. This includes exchanging information with other companies and organizations for the purposes of fraud protection.

We may also disclose collected information, including Genetic Information:

  • To comply with law, a valid court order, a judicial proceeding, subpoenas, warrants, bankruptcy proceedings, or in connection with any legal process, provided that we will not disclose Genetic Information without a valid subpoena or search warrant specific to the requested patient’s Genetic Information. If we are required to disclose any data, we will do our best to provide you with notice in advance, unless we are prohibited by law from doing so.
  • To enforce or apply our Terms of Service and other agreements.
  • To a buyer or other successor in the event of a merger, divestiture, restructuring, reorganization, dissolution or other sale or transfer of some or all of Elsie’s assets, in which information held by Elsie about our users is among the assets transferred. This Data Privacy Policy would continue to apply to information collected while it was in place.

Other than as described above, we will never provide collected information to anyone for any purpose under any circumstances. 

Prevent Data Sharing

Elsie strives to provide valid alternatives regarding the information we collect. The following tools are in place to improve how you control your information: 

Tracking Technologies and “Do Not Track.”

You can set your browser to refuse all or some browser cookies, or to alert you when cookies are being sent. If you disable or refuse cookies, please note that some parts of our website may not be accessible or not function in the proper way. Because we do not deliver or track online ads we currently do not “listen” or respond to your selection of the “Do Not Track” option provided by your browser.

GoSquared

Elsie works with GoSquared to better understand our users and their behaviour and to enhance the performance of our services. You can learn more about GoSquared’s Privacy policies and opt-out at any time.

Sharing Information with Partners

We will not provide any Account Information, Clinical Information or Genetic Information to any Partner until there’s explicit consent to allow the Partner to receive and use such information. Information that has been shared with a Partner based on collected consents will be subject to that Partner’s privacy policy. It is important to review the privacy policies of our Partners so that you can make an informed choice about using Elsie’s Services and shared information. To stop sharing data with a specific Partner or to request the removal of your data from a Partner, please refer to the Partner’s specific policies or contact Elsie Legal Support (check Data Access & Modification).

Data Security & Protection

Coimbra Genomics has taken appropriate technical and organisational measures to guarantee data security, in particular to protect your personal data against access by third parties, as well as accidental or intentional modification, loss or destruction, notably through the encryption of Clinical and Genetic data. Such measures are reviewed periodically and adapted in line with the state of the art.

Elsie limits access to collected data to selected Coimbra Genomics’ employees who we believe need access to it to provide Services to you or to do their jobs. In addition, we put in place industry standard physical, technical, and procedural safeguards designed to secure your Account Information, Clinical Information, Genetic Information and any other personal information from accidental loss and from unauthorized access, use, alteration and disclosure.

Changes to Elsie Data Privacy Policy

This document represents the most up-to-date version of Elsie’s Data Privacy Policy. Deeper changes to how Elsie accesses, manages or stores any relevant information will be transmitted to all interested parties through the email addresses specified in the Account Information. You are responsible for ensuring we have an up-to-date, active and deliverable email address for you. You are also responsible for visiting our Services and this Data Privacy Policy from time to time to check for any relevant changes. You will be notified of all changes with at least 2 weeks prior notice after which the changes become effective, and they apply to all access to and use of the Services from that point onward. If you use our Services after we make changes to our Data Privacy Policy, you acknowledge and agree to the current version of the Data Privacy Policy. 

Questions or Comments

To ask questions or comment about this Privacy Policy and our privacy practices, you may contact Elsie Legal Support here or call +351 308 808 968.