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What it takes to be a scientist?
Posted: Wednesday, February 8, 2017 6:16 PM
Joined: 12/20/2016
Posts: 100

New York Times Magazine just published a piece of Q&A:

Q: I’m an older scientist who has spent decades leading a small laboratory at a wellknown medical center. Much of our work is purely for the joy of discovery, but we also seek badly needed cures for illnesses. A cure for Alzheimer’s disease is beginning to look attainable with technology we are pioneering. While investigating genes for early onset Alzheimer’s, we invented a genetransfer method that stopped the brain damage and restored cognitive function. Eureka! Sadly, my doctor has just given me a diagnosis of earlystage Alzheimer’s. Given that no truly effective treatment is out there yet, can I try dosing myself with our potential cure? Do I have the right, given that I will otherwise die of dementia before a clinical trial could even begin? I plan to do this alone. None of my people will know about it. It’s something like a highaltitude, lowopening jump. It is not reversible and may be dangerous. But is it wrong? Name Withheld. 

A: I’m sorry to hear about your illness. As our diagnostic capacities regarding dementia increase, more and more people face this distressing news. That makes the work you are doing especially important, and I’m glad that you have hopes for the approach that your lab is studying. I can see the temptation you face. What’s more, the history of medicine is full of cases in which researchers experimented on themselves. Salk gave himself his polio vaccine before it was given to the public. The inventor of Valium tranquilized himself before tranquilizing the multitudes. Barry Marshall, the researcher who identified Helicobacter pylori as a cause of stomach ulcers, gagged down a bacterialaden broth and studied the results.

One reason this practice was permissible — even heroic at times — was that because the subject was the experimenter himself, informed consent wasn’t an issue. There are obvious limits to such “n of 1” case studies — an anecdote isn’t data — but knowledge has sometimes been advanced this way. Because you are entitled, in my view, to take your own life if you have normal mental competence, you have the right to risk your own life, especially in the interest of improving the quality of your remaining years. And if having subjected yourself to this experimental treatment, you experienced drastic improvement and revealed what you’d done, it’s conceivable that you could help accelerate the process of moving the therapy to clinical trials. (Or not: Early dementia can be episodic, and its progression may lack a fixed course.)

Still, what you’re proposing raises some moral considerations you should weigh carefully. One is that the biological materials and intellectual property involved aren’t yours. You would be stealing them. Perhaps you’ve determined that the loss to their institutional owners would be de minimis. A bigger issue is that you would be breaching your understanding with your employers. And that’s important, because there could be larger risks to them. What the risks (and therefore the ethical issues) are would depend on how the genes were transferred. If you did it by editing the genes of your own pluripotent stem cells, that would involve no obvious risks to others that I can see. Suppose we were talking about a genetically modified viral vector, however. That would raise biosafety issues: Is it “replication competent” — is there any chance of shedding and spreading? Has a rigorous hazard assessment been done? Once the virus was released from the lab, your employers, as well as you, could be liable for the consequences. At least in theory, there could be an exposure risk to people who, unlike you, aren’t in a position to give informed consent. You’re well placed to assess the probabilities here, but not as well placed as a properly constituted human-subjects review committee. 


Can't you tell what a real scientist IS?


Mimi S.
Posted: Wednesday, February 8, 2017 7:04 PM
Joined: 11/29/2011
Posts: 7028

Interesting article.


I do not like questioners assumption that he will be dead before clinical trials are possible.


And last sentence of article. Incorrect terminology and assumption.
Posted: Wednesday, February 8, 2017 7:27 PM
Joined: 12/20/2016
Posts: 100

I guess that is exactly why not everyone can be a scientist. No offense. 


Posted: Friday, February 10, 2017 11:55 AM
Joined: 2/26/2016
Posts: 229

It doesn't sound to me like the guy is a real scientist. Most gene editing is done on plants and on animal embryos. My understanding is that human genetic editing is very restricted. I think it is a fake question from a fake scientist. The New York Times should do a better job of screening their questions.
Posted: Friday, February 10, 2017 3:45 PM
Joined: 12/20/2016
Posts: 100

I believe the NY Times DID, and the printed version will appear this coming Sunday on page MM18 of the Sunday Magazine. There could be some mixed up somewhere.

I appreciate, though, your questioning. As Buddha said:

"Doubt Everything, Find Your Own Light."