Running healthcare, research and public trust up the flag pole

By Paul C. McLean

While I was aghast earlier this week that the White House struggled over whether to fly the flag at half-mast or full for the death of John McCain, and relieved that it was still the American flag, I distracted myself from the drama in Washington with other news:

Item: In Europe, there were 5,000 cases of the measles in all of 2016, 24,000 in 2017, and already 41,000 halfway through 2018, including 37 deaths, according to the World Health Organization. Globally, measles remains a leading cause of death among young children even though a safe and cost-effective vaccine is available.

Item: In the bizarre case of a convicted murdered claiming his victim wouldn’t have died had he stayed on life support, the Georgia Supreme Court rejected that argument because the patient “was basically brain dead.” [PDF]

Item: Twenty-five years later, gene therapy finally got a common-sense definition: “the intentional, expected permanent, and specific alteration of the DNA sequence of the cellular genome, for a clinical purpose.”

Bioethicists, policymakers, and clinicians tend not to lump brain death, gene therapy and the anti-vaccine movement together. And why should they? Though fate management is central to each, they are perplexing enough to the public (i.e. me) when considered separately.

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Can a national conscience be gene edited?

By Paul C. McLean

Gene editing is at once promising and perilous. Or, as John Oliver said in a recent episode of his news show, it is ”either going to kill all disease or kill every last one of us.”

The Nuffield Council on Bioethics is not as amusing as John Oliver, and unlike the summer film “Rampage,” its new gene editing report features neither The Rock nor a genetically modified, 30-foot wolf.

But if you want to understand what we may actually be getting ourselves into, England’s de facto national bioethics commission has produced a useful roadmap for educating the public and addressing concerns. It may the summer read you’ve been looking for.

And if there’s a gene splicer for envy, I’m ready to be CRISPR’d.

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The non-capture capture of “patient voice.” Isn’t it ironic?

doctor and patient talk

One challenge of Patient Centered Outcomes Research is to make sure the patient voice isn’t “captured.”

 

Register here for this weeks’s event, “Putting Patients at the Center of Research: Opportunities and Challenges for Ethical and Regulatory Oversight”

By Paul McLean

In a previous life I was a headline writer, so I have to give props for the title of this Friday’s Petrie-Flom panel: “Patients and Conflict of Interest: How Can We Keep the Patient’s Voice from Being ‘Captured’?

That is, how do you avoid “capturing” the patient voice when “capturing” the patient voice is the whole point of Patient Centered Outcomes Research? And yet this is a central challenge to bringing expertise unique to the receiving end of medicine and research into all levels of the process.

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