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
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 libel/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?

7 thoughts on “Stem cell blogging dilemmas: patient disclosures, lawsuits, & more”

  1. Bachelor of Interior Program Telkom University

    You are so inspiring. And an amazing blogger. can i learn from you?

  2. 1) Carry an insurance policy. There are policies that are relatively cheap ($200, maybe $250 a year for example for $1 million in coverage as a hypothetical, thus cost a latte a day or less) and cover “social media” and/or blogging specifically. Also, you can often add an umbrella policy onto your own homeowner’s insurance (if you own a home and have a standard policy on that, you merely need to keep maximum coverage limits on your home and auto and then they will sell you a add-on umbrella for very cheap. $1m to $5 million that kicks in after all other insurance is exhausted. Everyone with any assets or risk IMO should carry an umbrella policy) and those umbrella policies will in most cases also cover libel/slander + personal lawsuit issues and are similarly cheap usually. The beauty of insurance – is once a “claim/lawsuit” is filed against you their policy holder, it’s THEIR money on the line now- and they put up an army of the finest attorneys money can buy to defend their interests and not pay a dime to any plaintiff.

    2) Get to know and be friends with the folks at the Electronics Frontiers Foundation. They have some of the finest attorneys in the country (and world) in this arena you are discussing and are expert at internet/communications freedom and defense of same. They’ve won landmark cases (all the way to the Supreme Court SCOTUS) protecting journalists (you’re essentially in the realm of “journalism” here via what you do on this blog), bloggers, website hosting companies and more – and they are 100% pro freedom of open debate and robust free speech. They love people like you who are doing the work of the people via free and open forums, that have directly led to both robust scientific discussion and even social change. They often, in a high profile case will offer “pro-bono” for free legal services (or will refer you to a top attorney who’ll take a free speech defense case pro-bono as a matter of principle) and they will vigorously defend attempts to silence platforms such as yours and also are expert at navigating the very questions you asked/pondered above.

    The EFF (Electronic Frontiers Foundation) they like high profile cases such as a university professor discussing a key/evolving social issue such as stem cells- it’s right up their alley of cases they will take, versus Joe Q. Public and his video gamer blog that made someone mad or whatever. You’re the very type they like to speak with and defend: tied to a well known university, PhD credentials, attempting to illuminate and promote robust scientific and social debate of a very often controversial topic “stem cells” that has included members of the public not only being ripped off financially, but gravely harmed in now numerous proven legal cases, involves emerging case law such as the FDA/DOJ and high profile court cases, etc :

    3) Regarding comments: You are not liable for the comments of others just because they are, or were posted on your platform and blog. This is the essence of law section 230 regarding the internet. Obviously, for the reputation of your site/blog and the kind of “open debate you want to foster” as most do, you want “some” moderation of comments – such as anything regarding violence is flushed ASAP, or direct attacks on a person w/o any merit get flushed, etc. But in general, the “platform/host” is not liable for what someone else said or posted on it – else Facebook and Youtube and 1 million other internet sites would have been sued out of existence a long time ago. The most that could happen to you regarding a “blog comment” made by another individual – is the person who feels said comment “harmed” them, could try and subpoena from you the IP address or email or other identifying information of the person who made said “libelous/defamatory” post. The “harmed” person (libel, slander, whatever they feel is their beef) can then attempt to track down that comment maker – and their legal beef and especially any lawsuit is with that individual and them alone, not you. IF you have those logs, you can turn over that information per your written privacy policy. If you don’t retain those logs or have them retained only for limited periods (6 months for example is reasonable) – then you have nothing more to offer.

    VPN, virtual private network services “work” on the very policy of logging ZERO traffic or identifying information, thus they can produce nothing upon request. It’s been tested on capital murder cases all the way to the Supreme Court, and was upheld. They can’t produce for the FBI or whoever, what they don’t have. And that subpoena “about a hypothetical libelous comment” if you were to receive one, if it was me running a blog, would need a court order (judge) backing it. IMO, subpoenas issued by attorneys only (any attorney can issue a subpoena or a cease and desist letter or similar) – are good for bird cage liner or lighting the fireplace and not much else. I wouldn’t even respond to them if it was me. Only way a court/judge signs-off on a subpoena for an individual’s identifying information, means the person claiming harm has to believe strong enough to pony-up and file a real life lawsuit and prove to the judge that their subpoena to un-mask that comment maker has merit, versus just tossing around idle threats and frivolous lawsuit threats. If a blog post/comment maker were to receive such a subpoena attempting to un-mask their true identity and location, their first recourse and legal right is an opportunity to “quash” it ASAP, and end the lawsuit right then and there- which is often how frivolous “libel” cases are swiftly ended. Referring back to the Electronic Frontiers Foundation – they cover it here (Section 230 of the Communications Decency Act):

    Robust debate and speech that gets a little rough at times- is the backbone of a free and open society. Start down the slippery slope of silencing those who “offend” someone- and you’ll eventually end up with people in prison or literally put to death for speaking or even “thinking” incorrectly. World history is littered with it- and I’m very, very “close” to someone who survived and escaped such a regime. That regime killed off millions of their own citizens by the time they got finished and stopped. If one spoke “incorrectly” about the “party leader”, you got a bullet in the back of the head. That’s not hyperbole or over the top, it’s the straight truth – it’s again, the history of the world and why we’re still “America” and protect freedom of speech so, so vigorously.

    Read the writings of Benjamin Franklin, who ran what was essentially a “political rag/newspaper” for a while and was a prolific writer in general (he operated an old version of a “blog” for all intents and purposes – and he’d be a “satirist” by today’s title, and an often harsh and vigorous one to put it mildly). His favorite targets of “ripping um a new one via public writing” in robust and scathing op-eds by Franklin (often including cartoons and visuals), were politicians and law makers. He also tackled important “social issues of the day” (like um….STEM CELLS) and the battle between the sexes and more. He understood free speech and robust public debate as the key to a new world, truly free society; because the one they’d fled and ran from (England) – if you spoke freely about the wrong person/politician or King, you literally found your head laying in the bottom of a box, after swift separation from your body.

    You’re doing a very good thing here Dr Knoepfler – don’t let fear or those that want to silence so called “critics” stop your freedoms and rights under our Constitution. Regimes start with ONE person such as yourself and this product of years of hard work and love and dedication, “The Niche” being silenced or intimidated into being silenced – and can rapidly head downhill from there.

  3. #1 – Consult a Lawyer for any law related questions. Don’t rely on any one posting here for legal advice (expect for this advice in #1 of course). Find out what is suable and not. (Heck, ask some Law students to do a review of your site and concerns… extra credit projects maybe?)

    #2 – Draft and post a ‘Terms of Use’ for the blog to clearly state what is allowed and what you will do in terms of specific information you intend to edit (ie names of minors, or individual who may be commented on by a 3rd party). Have a check box that people have to agree with the ToU.

    #3 – Have a brief disclaimer in the “Leave a Reply” field citing you retain the sole right to make certain edits and withholdings of names, or refusal to post, and refer people to the ToU box for details. This isn’t a public forum, it is your blog.

    #4 Have general guidelines in the ToU and or the brief disclaimer to better highlight what is expected.

    #5 Consult a Lawyer. Again, the main issue is what is legally allowed (libel, slander, HIPAA, etc) from a site you control and you choose to allow to be posted. As long as it complies with state and Federal laws freedom of speech pretty much reigns supreme.

    1. Thanks, Matt. I do fairly regularly consult with an attorney and probably will in the future as well on potential new policies. I do have some blog policies and disclaimers, but I’m planning to update these with more specifics.

  4. I appreciate your assiduous and thoughtful work to increase awareness of stem cells and the many issues they present. This is a valuable resource that brings light into otherwise shady – though highly promising – areas. I believe many patients benefit directly and indirectly from your work.

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