Privacy Policy

PRIVACY POLICY:
INCIID, Inc.The InterNational Council on Infertility Information Dissemination: A Virginia nonprofit corporation
Last Updated: May 7, 2026
INCIID IS A JOURNALISM ENTITY. OUR SOURCES ARE PROTECTED.
Before you read anything else in this policy, and understand this:

INCIID is a journalism entity.
Our forum members are sources. Their anonymity is not a technical convenience. It is a journalistic protection. We will defend it.

INCIID is not only a patient community. We are a publisher and journalism entity that has produced original health reporting, patient advocacy content, medical education, and community journalism for over 30 years. Our articles, podcast episodes, policy analyses, and educational resources are informed by — and in many cases draw directly from — the experiences, testimony, and disclosures of anonymous community members who share their stories in our forums and through direct communication with our editorial team.

A member who shares their diagnosis, their treatment history, their embryo outcomes, their insurance battles, or their experience with pregnancy loss in our forums is providing information that may directly inform INCIID’s published work — our articles, our advocacy positions, our grant applications, our policy testimony, and our public communications. That information is shared in confidence. It is protected as such.

The relationship between INCIID and the members of our community is the same relationship that exists between a journalist and a confidential source.

INCIID asserts the same source protection rights recognized under shield laws and journalistic privilege that apply to other news organizations and publishers. We will not voluntarily identify anonymous community members. We will not confirm or deny whether any specific individual has participated in our community. We will not provide forum content, private messages, or registration data in response to informal requests. We will vigorously contest any formal legal demand for member information to the fullest extent permitted by law.

This is not a position we take lightly. It is a position we take because the stakes for our community are real.

Why This Matters Now — The Reproductive Health Data Risk Landscape

The landscape of digital privacy has changed dramatically — and for people navigating fertility treatment, pregnancy loss, and reproductive healthcare, the stakes have never been higher.

In 2022, Facebook turned over private messages between a mother and daughter to law enforcement as part of a criminal investigation involving reproductive healthcare. The company complied because it had no particular obligation not to. A Mississippi woman spent two years incarcerated after having a miscarriage because she had Googled information about medication — and her search history was used as criminal evidence against her. At least 294 crisis pregnancy centers have been found sharing visitor data with Facebook through tracking pixels, creating a digital trail that could potentially be used to infer pregnancy status and identify individuals seeking reproductive care.

These are not hypothetical risks. They are documented facts.

IVF is not abortion. But in the current political and legal climate, the line between reproductive healthcare and criminal liability is being drawn and redrawn in ways that are unpredictable, inconsistent, and deeply frightening for fertility patients. In some states, legislation has been proposed or passed that could affect the legal status of embryos created during IVF. The people who use INCIID’s forums to discuss their treatment, their diagnoses, their embryos, and their families deserve to know exactly how their information is — and is not — held here.

Here Is What Makes INCIID Different
INCIID is not a social media platform. We are a nonprofit patient advocacy organization and journalism entity that has served this community for over 30 years. We collect the minimum information necessary to operate our community. We do not retain structured, searchable records of what members discuss in forum threads as individual data points tied to identities. We do not have advertising relationships that create incentives to collect or share your data. We do not profit from your engagement.

Facebook has turned over private messages to law enforcement in reproductive health investigations. Google search histories have been used as criminal evidence. INCIID has never operated that way. We never will.

We are a journalism organization. Our sources are protected. Our community’s trust is the foundation of everything we do — and we will defend it with every legal tool available to us.

What You Can Do to Protect Yourself
We also encourage our members to be thoughtful about their own digital footprint:

Be aware that conversations on Facebook, Instagram, and other social media platforms — including private messages — may be subject to law enforcement requests that those platforms will likely comply with
Consider using a separate email address for fertility-related accounts and communications that is not linked to your primary identity
Be cautious about what you search for on major search engines in relation to your fertility treatment, particularly if you live in a state with restrictive reproductive health legislation
Be aware that forum content on INCIID may be indexed by search engines including Google, which means posts could appear in public search results. We strongly encourage members to never include personally identifying information in forum posts for this reason. Your handle protects your identity — but the content of what you write may be publicly searchable.

INCIID has always been a safe place. We intend to keep it that way. We are a journalism entity. Our sources are protected. Our community’s trust is the foundation of everything we do.

INCIID does not sell your data. We do not share your personal information with advertisers. We do not profit from your presence here beyond the mission of serving you.

Our Promise to You

INCIID has served the fertility, pregnancy loss, and family-building community since 1995. We understand that the people who come to INCIID are navigating some of the most private and emotionally significant experiences of their lives. Protecting your privacy is part of our mission. It is a core value that has guided every decision we have made about how this organization operates online. Everything in this policy reflects that commitment.

1. Who We Are

This Privacy Policy applies to INCIID, Inc., a Virginia nonprofit corporation, and covers all content and services available at inciid.org, forum.inciid.org, and any other INCIID-operated web properties. If you have questions about this policy, please contact us at the information provided at the end of this document.

2. Information We Collect and Information You Provide at Registration

When you register for an account on inciid.org or forum.inciid.org, you are required to provide:

Your real full legal name
Email address
City, state, zip code, and country
A chosen display name (your handle) – select a name wisely and if you need to change it – contact us.

Your real name is required at registration for account verification, identity confirmation, and in rare cases, enforcement of our terms of use. It is never displayed publicly, shared with other members, or used for any commercial purpose. Ever.

Your handle is the only name ever visible to other members or the public. We strongly encourage you to choose a handle that does not identify you personally.

IMPORTANT: INCIID requires real names at registration because our community deals with deeply sensitive health and personal matters. Verified identity deters bad actors, protects vulnerable members, and ensures accountability within our community while preserving your public anonymity.

b. Information Collected Automatically

When you visit INCIID, our servers and analytics tools automatically collect certain technical information including:

Browser type and version
Device type
Pages visited and time spent
Referring website
General geographic location (city or region level only — not precise location)

We use Google Analytics (GA4) to help us understand how our site is used so we can improve it. Google Analytics uses cookies to collect this information anonymously. You can opt out of Google Analytics tracking by installing the Google Analytics opt-out browser add-on available at tools.google.com/dlpage/gaoptout .

c. Cookies

INCIID uses cookies — small files stored in your browser — for the following purposes:

Essential cookies: Required for login, session management, and basic site functionality. These cannot be disabled without affecting your ability to use the site.
Analytics cookies: Used by Google Analytics to collect anonymous traffic and usage data as described above.
Preference cookies: Used to remember your settings and preferences between visits.

INCIID does not use advertising cookies. No third-party advertiser places cookies on your device through INCIID.

3. How We Use Your Information

We use the information we collect for the following purposes:

To create and manage your account
To operate and improve the INCIID website and community forums
To send you information about INCIID services, resources, and updates relevant to our community — you may opt out of these communications at any time
To understand the demographic makeup of our community in aggregate — this information is used in funding proposals and grant applications in a completely anonymized form that does not identify any individual
To moderate the community forums and maintain a safe environment
To respond to your questions and support requests

We do not: Sell your personal information to anyone, for any purpose, ever. Share your personal information with advertisers or marketing companies. Use your information to serve you targeted advertising. Share your personal information with pharmaceutical companies, fertility clinics, insurers, or any other commercial entity.

How We Use Demographic Information

INCIID collects demographic information from registered members including geographic location, age range, and general health situation as it relates to fertility and family building. This information is used exclusively for the following purposes:

Grant applications and funding proposals. Demographic data helps us demonstrate to funders the scope and diversity of the community we serve. This information is always presented in aggregate — meaning it represents the community as a whole, never individual members.
Website and content improvement. Understanding who uses INCIID and what they need helps us create better resources and prioritize content.
Research and advocacy. INCIID may use anonymized aggregate demographic data to support infertility advocacy, policy work, and public awareness efforts. This data is always presented in a way that makes individual identification impossible.

We never identify individual members in any report, proposal, or public communication. We never sell demographic data to any commercial entity. We never share demographic data with sponsors in a form that could identify any individual.

4. The INCIID Community Forums

The INCIID Community Forums at forum.inciid.org operate under specific privacy standards that reflect the sensitive nature of the conversations that take place there.

Your Identity Is Protected Here — And We Take That Seriously

INCIID requires your real name at registration for verification and safety purposes only. It s never visible to other members or the public under any circumstances.

In all public areas of the forum, you are known only by your chosen handle. Publicly sharing your real name, location, phone number, email address, workplace, or any other personally identifying information is not only strongly discouraged — it is prohibited. This policy exists to protect you.

The nature of our community means that members are often sharing information about their health, their family, their finances, and their most private experiences. That information belongs to you. It should stay here, within this community, attached to a handle — not to your identity.

Forum Privacy Standards

Handles only — publicly. Your real name is never displayed in any public area of the forum under any circumstances.
Registered members only. Forum content is visible to registered members only. Non-members cannot browse forum threads.
No sharing of personal information. Sharing your own or another member’s real name, address, phone number, workplace, or any identifying information in public forum areas is prohibited. Members who violate this policy will have posts removed and may have their accounts suspended.
Private messaging. If you wish to contact another member directly, please use the private messaging system. Do not request or share contact information publicly.
INCIID moderates the forums to maintain a safe, respectful, and accurate environment.
Post retention. Forum posts may be retained as part of the community record. If you wish to have specific posts removed, please contact us directly.

IMPORTANT: INCIID will never ask you to share personal information publicly. Anyone who pressures you to do so — whether another member or someone claiming to represent INCIID — should be reported to our moderation team immediately.

5. The ACEs Personal Screening Tool

The ACEs (Adverse Childhood Experiences) personal screening tool available on INCIID runs entirely in your browser. INCIID does not collect, store, transmit, or have any access to your answers or your score. Nothing is saved when you leave the page. This tool is for your personal use only.

Your results are never shared with anyone and are not part of any record — medical, legal, or otherwise. The tool is designed to be completely private by design.

6. Data Security

INCIID takes reasonable technical and organizational measures to protect your personal information from unauthorized access, loss, or disclosure. These measures include:

Encrypted passwords — your password is never stored in plain text
Secure HTTPS connections across all INCIID web properties
Regular security updates and monitoring
Restricted access to member data within our organization

No method of transmission or storage is completely secure. In the event of a data breach that may affect your personal information, we will notify affected users as required by applicable law and take prompt steps to address the breach.

7. Data Retention and Your Rights

How Long We Keep Your Data

We retain your account information for as long as your account is active. If you request deletion of your account, we will remove your personal information from our active systems within a reasonable timeframe. Some information may be retained in backup systems for a limited period or as required by law.

Your Rights

You have the right to:

Access the personal information INCIID holds about you
Correct inaccurate or outdated information
Request deletion of your account and personal data
Opt out of non-essential communications at any time
Request a copy of your personal data in a portable format

To exercise any of these rights, contact us using the information provided at the end of this policy. We will respond to all requests within 30 days.

8. California Residents — CCPA Notice

If you are a California resident, you have additional rights under the California Consumer Privacy Act (CCPA), including:

The right to know what personal information we collect about you
The right to request deletion of your personal information
The right to opt out of the sale of your personal information
The right to non-discrimination for exercising your privacy rights

INCIID does not sell personal information. We never have. We never will. This is not a legal formality — it is a founding principle of how this organization operates.

California residents may submit requests to access or delete their personal information by contacting us at the information provided at the end of this policy. We will respond to verified requests within 45 days.

9. Children’s Privacy

INCIID does not knowingly collect personal information from children under the age of 13. Our services are intended for adults. If you believe a child under 13 has provided personal information to INCIID, please contact us immediately and we will take steps to remove that information from our systems.

10. Links to Other Websites

INCIID contains links to third-party websites, including Amazon through our affiliate program, and external resources referenced in our articles and forum content. INCIID is not responsible for the privacy practices or content of any third-party website.

Our participation in the Amazon Associates program means that when you click an Amazon link on INCIID and make a purchase, Amazon may place cookies on your browser in accordance with their own privacy policy. INCIID receives a small commission on qualifying purchases, which supports our nonprofit mission.

We encourage you to review the privacy policy of any website before registering or providing personal information.

11. Changes to This Policy

INCIID reserves the right to update this Privacy Policy at any time. When we make material changes, we will notify registered users by email or by posting a prominent notice on the website at least 30 days before the changes take effect. The date at the top of this policy reflects when it was last updated.

Your continued use of INCIID after any changes constitutes your acceptance of the updated policy. If you do not agree with the updated policy, you may request deletion of your account at any time.

12. Contact Us

If you have questions, concerns, or requests regarding this Privacy Policy or your personal information, please contact us:

INCIID, Inc.
PO Box 12
Clifton, Virginia 20124
Phone: (703) 379-9178
FAx: (703) 379-1593

Website: inciid.org

About INCIID

The InterNational Council on Infertility Information Dissemination (INCIID) is a 501(c)(3) nonprofit organization and journalism entity founded in 1995. INCIID provides evidence-based information, peer support, original health journalism, and community resources to individuals and families navigating infertility, pregnancy loss, adoption, and family building. This Privacy Policy applies to INCIID, Inc. and its operated web properties including inciid.org and forum.inciid.org. All content on this site is provided for informational purposes only and does not constitute legal or medical advice.