All posts by endocrine-witch

What are we all going to do about medical misinformation on social media?

As I write this, I remember a colleague who had the courage to speak out against medical misinformation on Facebook and got charged for cyberlibel. What are we all going to do about medical misinformation on social media? Because it’s going to take a village.

It’s not everyday that editors-in-chief of cardiovascular scientific journals publish a statement like this

Purveyors of social media must be responsible for the content they disseminate. It is no longer acceptable to hide behind the cloak of platform. We, as editors, are charged with evaluating the validity of the science presented to us for possible publication, and we work hard to fulfill this heady responsibility. Recognizing that lives are at stake, we reach out to thought-leading experts to evaluate the veracity of each report we receive. Here, we challenge social media to do the same, to leverage the ready availability of science-conversant expertise before disseminating content that may not be reliable.

https://www.ahajournals.org/doi/10.1161/CIRCOUTCOMES.119.005496

I attended a privacy summit recently, where one speaker noted that social media platforms are no longer mere information conduits but have become digital intermediaries who provide content themselves and decide which information is shown to their users. But do these social media platforms take responsibility for the content they disseminate? We know its users don’t, as it is often misinformation that goes viral.

I agree with Dr. Bryan Vartabedian when he says that doctors don’t control the information or even the conversation (as a side note, I’ve been invited by a medical society to give a conference presentation entitled, How to beat Dr. Google. My first slide will say, You can’t.) –

Patient access to information comes with benefits and risks. While the authors skew their discussion toward the problems with public access to information, they fail to acknowledge the tremendous benefit that patients derive from understanding their personal disease processes.

https://33charts.com/medical-misinformation/

As a clinician, I’ve seen how online information can not only engage, but empower patients to manage their conditions. Internet prescriptions have helped my patients understand not so common conditions like adrenal or pituitary tumors. Thanks hormone.org! The content I create on my Facebook page on commonly-asked questions about diabetes and thyroid disease, has helped my patients ask more nuanced follow up questions at consultations. I find it rewarding when a patient says, “In your Facebook video you said … but my experience is … and so I want to know …”

Certainly on my Facebook page, I’ve had to be vigilant about those who use the comments section to sell unproven therapies. I’ve had to add a long list of banned words to get such comments automatically hidden by Facebook, so I can delete them later. I’ve always been thankful that Facebook pages have this feature. Aside from the usual suspects (names of various supplements or personalities), I’ve even had to ban PM (private message). I’ve seen peddlers comment, “I’ve got something to cure that, PM me.”

If you check my Slideshare account, you will see many decks on establishing a professional social media presence for physicians. But how many Filipino physicians have done so? What I find encouraging though is I’ve received invitations from medical organizations to help their organizations craft a social media strategy. These organizations have established their social media presence and are looking to improve on how to reach the public.

Join the #HealthXPH tweet chat 9 pm Manila time, 2 February 2019 as we discuss what we can do about online medical misinformation.

T1. Should social media platforms take responsibility for medical misinformation shared on their networks? What are the responsibilities of its users?

T2. How can healthcare professionals as the editors-in-chief of cardiovascular scientific journals ask, vet the message on social media?

T3. Do you or your medical organization have a social media presence? What is being done by you or your organization to counter online medical misinformation?

Genome Editing: Have We Opened Pandora’s Box?

A Chinese scientist has announced that he edited the genomes of two human embryos to make them resistant to HIV. And that he had implanted these embryos in their mother, who gave birth to healthy twin girls last November. Jiankui He used CRISPR/Cas9, which according to yourgenome.org is the “most common, cheap and efficient system used for genome editing.” So we now have at least (are there more out there that we don’t know about?) two human beings, with altered genomes on the planet. Have we opened Pandora’s box? Are we on our way to Gattaca?


Gattaca is a 1997 American science fiction film. Society has been divided into the Valid (genetically modified) and the Invalid (unmodified). And it has become possible to tell the difference using biometrics. Disturbingly, the Valid people are eligible for better jobs.

Let’s discuss the ethics of genome editing at the #HealthXPH tweet chat on December 8, 9 pm Manila time.

T1. Do you agree with editing the human genome? If yes, under what circumstances? If no, why?

The father of the CRISPR-edited babies had HIV, but the mother did not. Was this a life-saving procedure for the twin girls? It has been argued that the babies did not have HIV and that there were safer ways to prevent them from getting it.

And then there’s Gattaca. Marcy Darnovsky, executive director at the Center for Genetics and Society has argued to ban human embryo editing –

We’re living in a time when racism and socioeconomic disparities are increasing dramatically. The last thing we need is for some biological procedure to fuel the false idea that some groups are biologically superior to others.

https://www.sciencenews.org/article/chinese-scientists-raise-ethical-questions-first-crispr-gene-edited-babies

T2. If the CRISPR-edited babies are otherwise healthy, does this justify what the researcher did?

How often have we heard this? Just because you can, doesn’t mean that you should. It is sobering to realize that the genetic alterations of the CRISPR-edited babies will also be inherited by their offspring.

Gene editing has been attempted for Hunter syndrome. This is a rare genetic disorder where an enzyme deficiency leads to accumulation of glycosaminoglycans in the body, damaging many organs. Those with severe disease may not survive beyond their teen years. Weekly infusions of the missing enzyme have helped some of those suffering from the disease.  A clinical trial was launched in 2017 using zinc finger nucleases (not CRISPR) to insert a healthy version of the gene in the patient’s genome. The trial has had mixed results.

How does this trial differ from Dr. He’s? He disabled a normal gene.

Instead, Dr. He went ahead and disabled a perfectly normal gene, CCR₅. While people who are born with both copies of CCR₅ disabled are resistant to H.I.V., they are more susceptible to West Nile virus and Japanese encephalitis.

https://www.nytimes.com/2018/12/05/health/crispr-gene-editing-embryos.html

By implanting the genetically-modified embryos, Dr. He also broke the law. The US FDA has classified implanting these embryos as akin to introducing a new biological product in human subjects, and is not accepting applications involving such embryos for research.

China does not have an explicit ban on using gene editing on embryos for reproduction, but the ministry of science and technology and the ministry of public health have issued ethical guidelines, stating that no human embryos used for research can been be implanted in humans or animals for reproduction.

https://www.theguardian.com/world/2018/nov/27/china-orders-inquiry-into-worlds-first-gene-edited-babies

T3. Is it possible to get informed consent for genome editing, when consequences remain mostly unknown?

The ethical practice of medicine requires informed consent. This means explaining to patients the possible risks and benefits of what is to be done. He/she must be able to understand and accept the risks.

It’s not clear if the participants in He’s trial were actually aware of what they were signing up for. He relied on an AIDS association to reach out to the patients and falsely described his work as an “AIDS-vaccine development project.

https://www.theatlantic.com/science/archive/2018/12/15-worrying-things-about-crispr-babies-scandal/577234/

Genome editing is relatively new, that even the scientists doing work in this field don’t know all the risks.