November 11, 2020

Stem cell blogging dilemmas: patient disclosures, lawsuits, & more

Stem cell blogging dilemmas: patient disclosures, lawsuits, & more

After all this time writing on The Niche here since 2010, I still haven’t entirely resolved certain blogging dilemmas including when a patient discloses something.

It’s kind of a jungle out there on the internet.

What kinds of tough blogging dilemmas do I face? I’m just going to give you some examples of the more common ones in this post.

Stem cell blogging dilemmas: patient disclosures, lawsuits, & more
Stem cell blogging dilemmas.

Patient disclosures & accusations

Privacy. One dilemma that still feels like it needs more concrete approaches on my end is when patients publicly disclose things to our community via their comments. This is a big blogging dilemma at times because patient privacy is so important. Of course, by commenting on this blog in a public way, patients are in a sense consciously indicating that whatever is in their comment is OK with them to be in the public domain. That is my assumption most of the time, but in some cases it’s not that simple.

Accusations. In another kind of situation, patients sometimes accuse clinics or their owners by name of serious wrongdoing. Maybe a patient is upset with an outcome from them having received iffy stem cells as a clinic. In their comment they submit to the blog (comments go through moderation requiring time for me to screen them before they go up) they make certain statements about the clinic or its providers that could be considered an accusation of wrongdoing on some levels including potentially violating laws.

I generally have a policy of not posting such comments, but sometimes the patient’s allegations against the clinic are more nuanced. They may not be saying something like, “They are a fraud!” (although that sometimes happens), but there is an implication. And what if the clinic owner or clinic has a previous documented history of fraud or some other serious violation?

Injured patient. What if a patient tells me that a specific clinic or doctor hurt them and they can document this pretty substantially? Do I have a duty to step out of my usual scientist role and do something about this? Report them to authorities? Encourage the patient to do so?

Patient privacy and relatives

In another kind of case, relatives of patients submit comments that raise complicated issues. This kind of thing was exemplified by a recent commenter who was the parent of a patient and submitted a comment in which she mentioned her adult child’s medical condition.

What do I do there?

Did she have permission from her child? I dealt with it by removing the commenters last name so no one, even going to extremes of searching the web specifically to try to identify the patient, could do so. In other cases, parents of autistic children or children with other medical conditions (who are still kids) have submitted comments, which is an even tougher blogger dilemma.

Lawsuit threat issues

I also have had clinics threaten litigation directly or indirectly over certain comments I posted or pieces I have posted. However, no litigation has ever actually happened. Some other key players in writing about the stem cell clinic and dubious regenerative medicine supplier world have also been threatened (e.g. see here).

Notably, the threats have almost universally been along the lines of “I’m unhappy about that post or comment”, but even when I follow up with them it seems they realize there is no liable/defamation and most often not even any potential error. Instead, the clinic in question just doesn’t like anything remotely like bad PR.

I also think the clinics realize that by suing or even these days by threatening a lawsuit, there are major risks to them via the Streisand Effect and other ways.

Delete or edit?

I’ve posted more than 2,000 comments here on The Niche, but sometimes it’s a tough call whether to OK certain comments. A common dilemma I face in such situations arises when a comment overall is in my view very useful and important for the community to read, but it contains one or a small handful of issues that are seriously problematic.

For instance, a comment might provide new information about a potentially dangerous clinic or problematic behavior by a biotech company or something like that, but at the same time it makes an unsubstantiated accusation of fraud or malpractice or something else that crosses a certain threshold. Does the unposted comment go in the trash in its entirety or do I email the person who submitted it to suggest that they consider revising it because of my concerns? It’s a judgment call, but I generally I go the latter route.

Overall perspectives

With all these and other complications, it’s almost as though I need an advisory committee to help me deal with specific tough issues with no obvious clear solution. In an ad hoc kind of way, I do on rare occasions ask colleagues both here at UC Davis and around the world for advice on certain blogging dilemmas, but I’ve been hoping to develop additional specific policies for the blog. I’ve seen though that many comments and situations defy easy categorization or coverage by policies here on The Niche.

If you write about biomedical science, whether on a blog or in other platforms, have you faced these kinds of dilemmas or others too? What did you do?

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