Social Media Policy Checklist for Stool Banks

Social media can help a stool bank reach potential donors, but recruitment messages should be accurate, voluntary, and designed to protect privacy. Use this checklist to keep public posts separate from private screening, consent, and research procedures.

Define eligibility and recruitment boundaries

• Describe the invitation accurately. Say that interested people may apply to become donors and must complete screening. Do not imply that an application, online questionnaire, or social media interaction confirms eligibility.
• Use approved donor eligibility criteria. Criteria can depend on the program and the applicable clinical, research, or regulatory pathway. Confirm public-facing language with the responsible clinical and compliance teams before posting.
• Keep recruitment transparent and voluntary. Explain the basic steps, location or practical requirements, and how to learn more. Don’t pressure people through repeated direct messages or imply that donation is a medical treatment or guaranteed benefit.
• Explain compensation plainly. If payment or expense reimbursement is offered, describe it accurately and follow applicable institutional and legal requirements. For research recruitment, incentives must not undermine voluntary choice.
• Use a private route for screening. Direct interested people to an approved form or staff contact rather than asking them to post health details in comments or send sensitive information through social media.

Don’t promise a donor will be accepted based on a short public description: screening and eligibility decisions should follow the program’s approved process. FDA explains that fecal microbiota products used to diagnose, prevent, treat, or cure disease are biological products under its oversight; the applicable requirements depend on the product and regulatory pathway. See the FDA overview of fecal microbiota products.

Protect donor and recipient privacy

• Keep health information out of public channels. Don’t ask applicants to disclose medical history, test results, or identifying details in comments or public posts. Limit access to screening records to staff who need them.
• Use unique donor identifiers. Keep identifiers and direct contact details separate from screening and donation records where practical, and limit who can link them.
• Describe records honestly. Coded or de-identified records are not necessarily anonymous if a key or other information can reconnect them to a person. Don’t call records “anonymized” unless that description is accurate.
• Set rules for social media replies. Train staff not to confirm whether someone is a donor, discuss a person’s screening status, or share identifiable donation or recipient information online.
• State privacy limits clearly. Explain which channels are monitored and direct people to a secure contact method for private questions.

HIPAA does not automatically apply to every stool bank. The HIPAA Privacy Rule applies to covered entities—such as certain health plans, clearinghouses, and health care providers—and their business associates, and requires safeguards for protected health information. Check whether your organization is covered or acting as a business associate, and follow any other privacy obligations and commitments that apply. See HHS’s explanation of the HIPAA Privacy Rule.

Explain voluntary donation and informed consent

• Make clear that donating is a choice. A person should be able to decline or stop participating without pressure.
• Separate an invitation from consent. A social media post can invite someone to learn more; it should not present a like, comment, or application as consent to donate or participate in research.
• Explain the consent process before collection. Use written informed consent where required by the applicable program, and explain the donation and screening procedures, foreseeable risks, how information and samples may be used or stored, and whom to contact with questions.
• Clarify what happens if someone withdraws. Explain how to stop future contact or donations and any limits on removing samples or information already used, distributed, or retained under applicable requirements.
• Disclose compensation and relevant choices. Explain any payment or reimbursement and avoid language that could make donation seem compulsory or guaranteed to benefit the donor.

A stool-bank consensus report recommends that donors receive information about risks and benefits and provide written consent covering matters such as screening, personal information, data storage, and possible future contact. Treat this as guidance for designing a clear donor process, not as a universal statement of U.S. legal requirements. See the consensus report on stool banking.

Describe donor screening accurately

• Explain that screening is a process, not a guarantee. State that applicants may need to complete a health questionnaire, discuss their history with qualified staff, and undergo infectious disease screening or other tests as specified by the program.
• Avoid claims of zero risk. Do not promise that screening can identify every health concern or eliminate all risk to recipients.
• Use current, approved language. Confirm descriptions of tests and procedures with the clinical or regulatory lead. Don’t publish a test list or claim that a donor is “cleared” unless the program has established that status under its process.
• Protect screening results. Collect detailed health information through an approved private channel, not in a comment thread or informal social media message.

FDA lists safety information and guidance related to fecal microbiota products on its fecal microbiota products page. Use the applicable current guidance and your program’s approved procedures rather than suggesting that one generic screening checklist applies to every stool bank.

Review research recruitment and ethics requirements

• Determine whether the post is research recruitment. Donor recruitment for a clinical service and recruitment of research participants can involve different requirements. Ask the institution’s IRB or human research protection office to determine which rules and policies apply.
• Submit proposed materials when required. Provide the recruitment plan, post text, images, links, screening questions, and planned responses to the reviewing office before use when required by the protocol or institutional policy.
• Do not assume every post has the same review status. Under the Common Rule, coverage and exemptions depend on the research and applicable institutional requirements. NIH guidance says active social media recruitment generally requires IRB review at NIH, while basic descriptive study listings may be treated differently.
• Keep the message consistent with the approved study. Describe the research accurately, avoid unsupported claims, and make clear that choosing not to participate will not bring a penalty or loss of benefits.

HHS explains the scope of the human-subject protections in 45 CFR part 46. For an example of institutional guidance on social media recruitment, see the NIH recruitment guidance, which instructs NIH researchers to describe recruitment websites and social media in the protocol and generally obtain review for active recruitment materials.

Establish a process for questions and withdrawal

• Name a contact point. Give applicants a staff contact or secure channel for questions about eligibility, screening, consent, privacy, and research participation.
• Use a consistent response process. Train staff to answer general questions without revealing anyone’s status or requesting sensitive information in public.
• Explain how to withdraw. Provide clear steps for stopping contact, screening, or future donations, as applicable to the program.
• Set expectations before consent. Explain any limits on stopping use of samples or deleting records after they have been used, shared, de-identified, or retained under applicable rules or agreements.
• Document and route concerns. Keep a private record of withdrawal requests and send research-related questions or complaints to the designated study or ethics contact.

A clear social media policy keeps recruitment separate from private screening, consent, and ethics review. Use accurate eligibility language, protect donor and recipient information, explain voluntary participation and withdrawal, and have the responsible institutional or clinical team review the process.

FAQs

Can stool banks recruit donors through social media?

Yes, social media can be used to invite people to learn about donation, provided the bank follows applicable privacy, institutional, regulatory, and platform requirements. Keep the post accurate, avoid collecting health details in public, and route interested people to an approved private process. If the post recruits research participants, ask the IRB or human research protection office whether review is required before posting.

What donor information should a stool bank keep private?

Keep identifying details and nonpublic information about applications, eligibility, health history, screening results, donation records, and contact information out of public channels. Use appropriate safeguards and access controls, and do not claim records are anonymized if a key or other information can reconnect them to a donor. HIPAA applies only to covered entities and business associates, so determine whether it applies to your organization.

What consent information should social media recruitment provide?

A recruitment post should briefly explain the purpose of the invitation, who may be interested, the next steps, and where to ask questions. It should also make clear that applying or responding online is not itself consent to donate or join a study. Provide the full consent information through the approved process before donation or research participation, including relevant procedures, risks, privacy practices, voluntary choice, and withdrawal information.

Does social media research recruitment require ethics-board review?

It may. Whether review is required depends on the research, applicable regulations, and institutional policy; some research may be exempt, and the reviewing institution determines how that status applies. NIH guidance generally calls for review of active social media recruitment materials at NIH. Submit the proposed plan and materials to the responsible IRB or research protection office before use when required.