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Our Ethics

IVTSF Ethical Commitments

All IVTSF activities, including research partnerships, data collection, educational initiatives, advocacy, and resource development, are guided by nationally and internationally recognized frameworks for human-centered and ethical practice. We serve families of every structure, identity, culture, and belief system. We recognize that pregnancy loss and multifetal outcomes are experienced within healthcare systems that do not affect all people equally. Gender, race, disability, socioeconomic status, geography, and cultural context shape access to care and how loss is understood and treated.

Our data practices are grounded in internationally recognized legal and ethical frameworks, including:

These standards guide how we collect, use, store, protect, and respect personal information. In alignment with ethical research standards and regulations, the IVTSF commits to:

Respect for persons and families by honoring autonomy, lived experience, cultural context, and the emotional realities of loss in multiple pregnancy. This includes respecting all gender identities and family structures, allowing individuals to define the meaning of their own experiences, and using assumption-free, trauma-informed yet scientifically accurate language in all interactions.
Beneficence and non-maleficence by ensuring that all initiatives seek to maximize benefit, minimize harm, and avoid retraumatization or exploitation. The IVTSF is committed to preventing emotional injury through careless language, sensational framing, or coercive engagement, and to prioritizing dignity and psychological safety in every context.
Justice and equity by promoting inclusive research and education that reflects diverse populations and global contexts, particularly those historically underrepresented in perinatal research. We recognize that gender, race, disability, socioeconomic status, geography, and cultural context shape access to care and the experience of loss, and we are committed to challenging bias and advancing equitable models of care and representation.
Informed participation and transparency by supporting clear communication, meaningful consent, and shared decision-making in all collaborative and research-related activities. Individuals and communities have the right to understand how their stories, data, and experiences will be used, and to engage on terms that respect their agency.
Scientific integrity and accountability by upholding rigorous standards of accuracy, independence, and ethical review in all scholarly and programmatic work.
Patient- and family-centered practice by centering the voices of those directly affected by vanishing twin syndrome and multifetal loss in the design, implementation, and dissemination of resources and research. We value lived experience as essential expertise and commit to collaborative, power-aware partnerships.

For more information on our privacy policy, see below.

Privacy Policy

The International Vanishing Twin Syndrome Foundation (“IVTSF,” “we,” “our,” or “us”) is committed to protecting your privacy and handling personal data in a manner that is ethical, trauma-informed, patient- and family-centered, and globally responsible. This website is hosted using Google Sites. We may use Google Forms and other Google Workspace tools to collect information. IVTSF is the data controller for all personal data collected through this site. Google acts as a data processor on our behalf.

1. What Information We Collect

We collect only the minimum information necessary to fulfill our mission, consistent with the principles of data minimization, proportionality, and non-maleficence.

Depending on how you interact with us, we may collect:

Contact information (e.g., name, email address)
Information you voluntarily provide through forms or surveys (e.g., feedback, stories, research interest, collaboration requests)
Limited technical data (e.g., IP address, browser type) through standard web services

We do not knowingly collect personal data from children under 13 without appropriate parental or legal guardian consent.

We avoid collecting unnecessary identifiers and do not require disclosure of health information unless it is directly relevant to a specific, voluntary activity (e.g., a research interest form).

2. How We Use Your Information

Personal data are used only for clearly defined, legitimate purposes, including:

Responding to inquiries and support requests
Providing educational resources or information you request
Managing research, collaboration, or volunteer interest
Improving our programs and services
Meeting legal, ethical, or reporting obligations

We do not sell personal data, use it for commercial advertising, or engage in profiling.

Consistent with the Belmont principles of respect, beneficence, and justice, IVTSF avoids any use of data that could cause harm, distress, exploitation, or retraumatization.

3. Lawful Basis for Processing (GDPR)

Under GDPR, we process personal data on one or more of the following lawful bases:

Consent – when you voluntarily submit information through a form or survey
Legitimate interests – for core nonprofit functions such as responding to inquiries and improving services
Legal obligation – where required by law

Where consent is the basis, participation is voluntary and may be withdrawn at any time without penalty.

4. Research and Health-Related Information

Where IVTSF activities intersect with research, quality improvement, or health-related data:

We follow principles consistent with the Common Rule, CIOMS, and Helsinki, including voluntary participation, purpose limitation, and appropriate oversight.
We distinguish clearly between research, education, and support activities.
We avoid collecting identifiable health information unless it is necessary and explicitly consented to.
We apply confidentiality safeguards consistent with HIPAA standards, even when HIPAA does not formally apply.

Participation in any research-adjacent activity is voluntary and free from coercion, consistent with the Nuremberg Code.

5. Data Storage and International Transfers

Data collected through this website may be stored on Google servers, which may be located outside the European Union or European Economic Area. Google uses Standard Contractual Clauses and other safeguards to support lawful international data transfers. Access to personal data is restricted to authorized IVTSF personnel and collaborators who require it for legitimate, mission-aligned purposes.

6. Data Retention

We retain personal data only for as long as necessary to fulfill the purpose for which it was collected, or as required by law. When data are no longer needed, they are securely deleted or anonymized.

This reflects GDPR principles of storage limitation, CIOMS and Common Rule guidance on proportionality, and PCC principles emphasizing dignity and respect for lived experience.

7. Your Rights Under GDPR

If you are located in the EU/EEA, you have the right to:

Access your personal data
Request correction of inaccurate data
Request deletion (“right to be forgotten”)
Restrict or object to processing
Request data portability
Withdraw consent at any time
Lodge a complaint with your local data protection authority

You may exercise these rights by contacting us using the information below in #10.

8. Cookies and Embedded Services

This site may use essential cookies and embedded Google services (such as Forms). These may collect limited technical information necessary for site functionality. Where required, we provide notice and obtain consent before non-essential cookies or tracking tools are used.

9. Security

We implement reasonable administrative, technical, and organizational safeguards to protect personal data against unauthorized access, loss, or misuse.

Our approach reflects GDPR security and accountability requirements, HIPAA-aligned confidentiality standards, UNESCO’s emphasis on dignity and human rights, and PCC principles emphasizing trust and safety.

10. Contact Us

To ask questions, exercise your rights, or request access, correction, or deletion of your data, please contact: contact@vanishingtwinsyndrome.org

By using our website, you hereby consent to our Privacy Policy and agree to its Terms and Conditions.

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