Scenario: Mental Health Crisis Data

[CatTruxillo]

This is a discussion forum for the activities in the Privacy and Security module of the Free SAS e-learning course, Responsible Innovation and Trustworthy AI.

Scenario: Mental Health Crisis Data

Consider This: 

What is the best way to balance the implicit consent of users in crisis with other potentially beneficial uses of data (which they likely will not have intentionally consented to but which can help them or others)?

Please share your ideas in this discussion. 

[Rogerio_Neiva]

Tough question. Although they gave the consent to use the data and as long as the date are anonymized and they can help other people, it seems OK. On the other hand, they are making money with my data but we also see this everyday in every online consent we give. If the product has no cost, you are the product.

[CarlosBarrera]

Being honest and transparent about intended use of data not only today, but also when change that intention in the future. It´s possible that some users wants to be compensated because use of his data.

[VernonHunte]

Clear easy-to-understand language & explanations on use of data, regular check-ins, and public reporting could help maintain trust would be importannt here. The properly formed and empowered independent ethics board could help oversee data use to align with ethical standards - again to build and reinforce trust.

[FRCARO]

1. I believe the problem fundamentally arises with users because there's objectively no trust in how their data is being handled: who can guarantee me that it's truly been anonymized?
2. As for using data for someone else's benefit, this is what has always happened: thanks to your experience, those who come after you will be a little better off. Therefore, I find this concept 100% acceptable.
3. Another problem is how you won't feel exploited (precisely because of point 2), but in a world where we need to feel increasingly united, it should be normal to help others, thanks also to my experience.
I think there's a solution for point 3. Just be clear from the start: we'll use the data for etc.
Regarding points 1., I don't think there will ever be general peace of mind. Point 2 is more of a state of mind than anything else.

[jomana-khatib]

• Informed Consent Limits: Users in crisis may not be in a mental state to give truly informed consent, even if they click "agree."

• Data Sensitivity: Mental health data is highly sensitive; anonymization doesn't fully eliminate risks of misuse or re-identification.

• Trust & Transparency: Organizations must be transparent about data use and build trust by clearly explaining both current and future applications.

• Ethical Governance: Independent ethical review boards can oversee decisions about secondary data use.

• Opt-In Over Opt-Out: Whenever possible, prioritize explicit, opt-in consent for secondary uses—especially commercial ones.

• Benefit Sharing: If data is used for profit, users or their communities should directly benefit, not just the organization.