Privacy Policy
Last edited: 1/24/24
This privacy policy ("Policy") describes how DCPData ("DCPData", "we", "us" or "our") collects, protects and uses the personally identifiable information ("Personal Information") you ("User", "you" or "your") may provide through the DCPData website (dcpdata.org) or in the course of purchasing any DCPData products (collectively, "Application"). The Policy describes how we share Personal Information with users' reported genetic relatives ("Sibling Pods"), which are the only people we share their information with unless users opt in to request our genetic detectives service, in which case our partners, DNAngels see more information below, will use your personal information in order to help you find your donor. The Policy further describes the choices available to you regarding our use of your Personal Information and how you can access and update this information. All of our privacy and data collection practices are GDPR and CCPA compliant. We do not sell user information to third parties. Consent, integrity, and security are paramount and demonstrable in our privacy and data collection practices. This Policy does not apply to the practices of companies that we do not own or control, or to individuals that we do not employ or manage.
Collection of personal information
We receive and store any information you knowingly provide to us when you sign up for the Application. Currently this includes your email address, user type ("Donor-Conceived Person", "Recipient Parent", or "Donor"), first name, and last name, assigned sex at birth, birth country, and birth state/province, which are required for you to be able to sign up on the Application and access any purchased DCPData products. Additional information you might choose to give us - which is optional for you to share and is only shared with those in your Sibling Pod when you are approved by your Pod Admin and when the members of your Sibling Pod are approved by your Pod Admin, unless you opt in to Genetic Detective Research or Anonymous Surveys (see below for more information) - can be:
- Donor Information such as the donor number, cryobank or fertility clinic(s) of which you were a customer, your donor's first and last name, and your donor's home country.
- Your or your donor-conceived child(ren)'s information, including first and last name, birth month and year, assigned sex at birth, pronouns, birth country, and birth state/province. We never share last names of any users or their children on the platform with any other users. We never share birth months with any other users, though users can opt in to share their or their children's birth year. We never share assigned sex at birth, birth country, nor birth state/province without the user opting in to share this information, and if they opt in we only share that information with those in their Sibling Pod.
- Health information including self-reported medical diagnoses, their age of onset, and any additional notes you include about the medical diagnosis. Medical information may also include genetic predispositions you are aware of via genetic testing or other means, and any additional notes about those predispositions you choose to share. Additional health info you may choose to give us includes general medical information and mental health diagnoses. We are not responsible for the accuracy of this information - it is solely your responsibility.
- Current information about yourself including your job or profession, your current country or residence, your current state/province of residence, and a picture of yourself.
- Non-identifying personal information including your social media handles, "fun facts" about yourself, a bio or short paragraph about yourself, and/or the clinic in which you were conceived.
Genetic Detective Services
Users may choose to opt in to request Genetic Detective Services, in which case any of the information above may be used by DCPData partners DNAngels for the sole purpose of helping users find information about their genetic parents and/or donors. Please be aware that we are not responsible for the privacy practices of DNAngels or third parties. We encourage users to read DNAngels's Privacy Policy (https://www.dnangels.org/privacy-policy/).
Anonymous Surveys
Users may choose to opt in to participate in Anonymous Surveys, in which case DCPData will send users surveys, the answers of which - with all names and identifying information removed from use - may be used by the DCPData team and partnered advocacy organizations to inform advocacy and policymaking. We are not responsible for the privacy practices or any of the ways in which the de-identified data is used by third parties.
Collection of non-personal information
When you visit the Application our servers may automatically record information that your browser sends. This data may include information such as your device's IP address, browser type and version, operating system type and version, language preferences or the webpage you were visiting before you came to our Application, pages of our Application that you visit, the time spent on those pages, information you search for on our Application, access times and dates, and other statistics.
Purchases
All purchases made through the Application are processed by a third party payment processor, Stripe (stripe.com). Stripe may ask you for personal and/or non-personal information, such as your name, address, email address, credit card information, or other Personal Information. Stripe has a privacy policy (stripe.com/privacy) that describes their collection and use of personal information. DCPData does not control Stripe or its collection or use of information. Any questions or concerns about Stripe’s practices should be directed to Stripe. Stripe provides us with certain non-personal information relating to purchases made by visitors to the Application. The non-personal information may include details of the purchase such as the date, amount paid, and product purchased. The non-personal purchase information may be linked to the Personal Information you provide to us (typically limited to your email address, as stated above). Stripe does not supply us with any of your other Personal Information such as your name, street address, or credit card information.
Managing personal information
You are able to update some of your Personal Information in the "Your Profile" tab of the Application. You can update your notification and privacy settings on the "Settings" tab of the Application, but will have to share your first name and last initial with your Sibling Pod. We will never share your contact information with anyone on the app - it is your sole discretion to do so - and will only use your contact information if you opt in to support Genetic Detective Research to help other donor-conceived people find their genetic relatives and for the reasons specified in the section below. You may opt out of these notifications or delete all but the required info (first name, last name, email, birth country, birth city, birth date) at any time by changing your privacy settings and/or deleting your information on your profile page. You may request that we delete your email address, but this will prevent you from accessing the products you have purchased from DCPData. When you update information, we may maintain a copy of the unrevised information in our records. Some information may remain in our private records after deletion of such information from your account for a retention period. Once the retention period expires, Personal Information shall be deleted. Therefore, the right to access, the right to erasure, your rights to access, add to, and update your information cannot be enforced after the expiration of the retention period. We will retain and use your information as necessary to comply with our legal obligations, resolve disputes, and enforce our agreements. We may use any aggregated data derived from or incorporating your Personal Information after you update or delete it, but not in a manner that would identify you personally.
Use and processing of collected information
Any of the information we collect from you may be used to personalize your experience; improve our Application; improve customer service; process transactions; send notification emails such as password reminders, updates, etc; and operate our Application. Non-Personal Information collected is used only to identify potential cases of abuse and establish statistical information regarding Application usage. This statistical information is not otherwise aggregated in such a way that would identify any particular user of the system. We may process Personal Information related to you if one of the following applies: (i) You have given their consent for one or more specific purposes. Note that under some legislations we may be allowed to process information until you object to such processing (by opting out), without having to rely on consent or any other of the following legal bases below. This, however, does not apply, whenever the processing of Personal Information is subject to European data protection law; (ii) Provision of information is necessary for the performance of an agreement with you and/or for any pre-contractual obligations thereof; (ii) Processing is necessary for compliance with a legal obligation to which you are subject; (iv) Processing is related to a task that is carried out in the public interest or in the exercise of official authority vested in us; (v) Processing is necessary for the purposes of the legitimate interests pursued by us or by a third party. In any case, we will be happy to clarify the specific legal basis that applies to the processing, and in particular whether the provision of Personal Data is a statutory or contractual requirement, or a requirement necessary to enter into a contract.
Email Notifications
DCPData uses emails to notify members of Sibling Pods of new information posted on the DCPData platform, including when a member of your Sibling Pod joins DCPData, when they post health information, when they post in the sibling pod forum, and when they send you a direct message. On signup you may receive multiple emails. After these emails, you can choose not to opt into email notifications, in which case you will no longer receive emails from DCPData, unless you are a Pod Admin for your Sibling Pod or you opt in to participate in Anonymous Surveys. You may choose to no longer be the Pod Admin once another member of your pod assumes the role of Pod Admin, at which point you will no longer receive emails from DCPData unless you opt in to receive notifications or to participate in Anonymous Surveys.
Information transfer and storage
Depending on your location, data transfers may involve transferring and storing your information in a country other than your own. You are entitled to learn about the legal basis of information transfers to a country outside the European Union or to any international organization governed by public international law or set up by two or more countries, such as the UN, and about the security measures taken by us to safeguard your information. If any such transfer takes place, you can find out more by checking the relevant sections of this document or inquire with us using the information provided in the Contact section.
The rights of users
You may exercise certain rights regarding your information processed by us. In particular, you have the right to do the following: (i) you have the right to withdraw consent where you have previously given your consent to the processing of your information; (ii) you have the right to object to the processing of your information if the processing is carried out on a legal basis other than consent; (iii) you have the right to learn if information is being processed by us, obtain disclosure regarding certain aspects of the processing and obtain a copy of the information undergoing processing; (iv) you have the right to verify the accuracy of your information and ask for it to be updated or corrected; (v) you have the right, under certain circumstances, to restrict the processing of your information, in which case, we will not process your information for any purpose other than storing it; (vi) you have the right, under certain circumstances, to obtain the erasure of your Personal Information from us; (vii) you have the right to receive your information in a structured, commonly used and machine readable format and, if technically feasible, to have it transmitted to another controller without any hindrance. This provision is applicable provided that your information is processed by automated means and that the processing is based on your consent, on a contract which you are part of or on pre-contractual obligations thereof.
The right to object to processing
Where Personal Information is processed for a public interest, in the exercise of an official authority vested in us or for the purposes of the legitimate interests pursued by us, you may object to such processing by providing a ground related to your particular situation to justify the objection. You must know that, however, should your Personal Information be processed for direct marketing purposes, you can object to that processing at any time without providing any justification. To learn whether we are processing Personal Information for direct marketing purposes, you may refer to the relevant sections of this document.
How to exercise these rights
Any requests to exercise User rights can be directed to the Owner by email at support@dcpdata.com. These requests can be exercised free of charge and will be addressed by the Owner as early as possible and always within one month.
Privacy of child users
We do not knowingly collect any Personal Information from children under the age of 13. If you are under the age of 13, please do not submit any Personal Information through our Application. We encourage parents and legal guardians to monitor their children's Internet usage and to help enforce this Policy by instructing their children never to provide Personal Information through our Application without their permission. If you have reason to believe that a child under the age of 13 has provided Personal Information to us through our Application, please contact us.
Non-Discrimination Policy
DCPData values your privacy and is committed to ensuring your rights are respected. In accordance with the California Consumer Privacy Act (CCPA), we pledge to not discriminate against any consumer for exercising their privacy rights. Specifically, we will not:
- Deny you goods or services.
- Charge you different prices or rates for goods or services, including through the use of discounts or other benefits or imposing penalties.
- Provide you with a different level or quality of goods or services.
- Suggest that you may receive a different price or rate for goods or services or a different level or quality of goods or services.
Affiliate and Partnership Arrangements
In the pursuit of broadening the reach and impact of our services, DCPData engages in marketing, partnership, and other business-related activities with selected affiliates. These affiliates may receive access to our products for free or at discounted rates as part of mutually beneficial agreements aimed at promoting our services and enhancing value for both parties. Such arrangements are not considered discriminatory under this policy, as they are based on legitimate business needs and are not related to the exercise of consumer privacy rights under the CCPA, GDPR, or any other applicable laws. These practices are part of our strategic business operations and are designed to improve the availability and effectiveness of our products in the marketplace. We appreciate your trust in us and are committed to fairness and transparency in all our business practices. For any questions or concerns about our non-discrimination policy, affiliate arrangements, or your privacy rights, please contact us at support@dcpdata.org.
Newsletters
We may offer electronic newsletters which you may voluntarily subscribe to. You may choose to stop receiving our newsletter or marketing emails by following the unsubscribe instructions included in these emails or by contacting us. However, you will continue to receive essential transactional emails.
Cookies
The Application uses "cookies" to help personalize your online experience. A cookie is a text file that is placed on your hard disk by a web page server. Cookies cannot be used to run programs or deliver viruses to your computer. Cookies are uniquely assigned to you, and can only be read by a web server in the domain that issued the cookie to you. We may use cookies to collect, store, and track information for statistical purposes to operate our Application. You have the ability to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. In addition to using cookies and related technologies as described above, we also may permit certain third-party companies to help us tailor advertising that we think may be of interest to users and to collect and use other data about user activities on the Application. These companies may deliver ads that might also place cookies and otherwise track user behavior.
Links to other websites
Our Application contains links to other websites that are not owned or controlled by us. Please be aware that we are not responsible for the privacy practices of such other websites or third parties. We encourage you to be aware when you leave our Application and to read the privacy statements of each and every website that may collect Personal Information. In particular, as noted above, purchases made through the Application are handled by Stripe and all such transactions, including any Personal Information or non-personal information collected by Stripe, are under the control of Stripe. We encourage purchasers to read Stripe’s Privacy Policy (stripe.com/privacy).
Information security
We secure information you provide on computer servers in a controlled, secure environment, protected from unauthorized access, use, or disclosure. We maintain reasonable administrative, technical, and physical safeguards in an effort to protect against unauthorized access, use, modification, and disclosure of Personal Information in its control and custody. However, no data transmission over the Internet or wireless network can be guaranteed. Therefore, while we strive to protect your Personal Information, and have layers of cybersecurity measures in place, you acknowledge that (i) there are security and privacy limitations of the Internet which are beyond our control; (ii) the security, integrity, and privacy of any and all information and data exchanged between you and our Application cannot be guaranteed; and (iii) any such information and data may be viewed or tampered with in transit by a third-party, despite best efforts.
Data breach
In the event we become aware that the security of the Application has been compromised or users’ Personal Information has been disclosed to unrelated third-parties as a result of external activity, including, but not limited to, security attacks or fraud, we reserve the right to take reasonably appropriate measures, including, but not limited to, investigation and reporting, as well as notification to and cooperation with law enforcement authorities. In the event of a data breach, we will make reasonable efforts to notify affected individuals if we believe that there is a reasonable risk of harm to the user as a result of the breach or if notice is otherwise required by law. When we do we will send you an email.
Legal disclosure
We will disclose any information we collect, use or receive if required or permitted by law, such as to comply with a subpoena, or similar legal process, and when we believe in good faith that disclosure is necessary to protect our rights, protect your safety or the safety of others, investigate fraud, or respond to a government request. In the event we go through a business transition, such as a merger or acquisition by another company, or sale of all or a portion of its assets, your user account and personal data will likely be among the assets transferred.
Changes and amendments
We reserve the right to modify this privacy policy relating to the Application at any time, effective upon posting of an updated version of this Policy on the Application. When we do we will revise the updated date at the bottom of this page. Continued use of the Application after any such changes shall constitute your consent to such changes.
Acceptance of this policy
You acknowledge that you have read this Policy and agree to all its terms and conditions. By using the Application you agree to be bound by this Policy. If you do not agree to abide by the terms of this Policy, you are not authorized to use or access the Application.
Contacting us
If you have any questions about this Policy, please contact us by email at support@dcpdata.com.