When rogue scientists abandon ethics: 1-23-19

Back in the 1990s, I began writing columns and analysis pieces for The Kansas City Star about the potential dangers of manipulating human genes.

I recall going to a seminar or two in Washington, D.C., to learn more about this fast-developing area and the various moral hazards it presented, from privacy concerns to cloning humans to generally using procedures the ethics of which had not been carefully thought through.

The scientific work in this field has advanced quite a bit since then with both good breakthroughs and with rogues running off and doing things outside the ethical boundaries of science.

An example of the latter happened late last year when He Jiankui, a young researcher in China, as described in this Atlantic piece, "became the center of a global firestorm when it emerged that he had allegedly made the first crispr-edited babies, twin girls named Lulu and Nana."

As the story noted, we still don't know for sure whether he accomplished what he said he did (and I could have capitalized the three uses of "he" in this sentence, given that it's his family name). That was in early December. As this later story notes, as of a few days ago, we still don't know for sure.

What we do know from this even later reporting is that He has been fired from his job and accused of violating ethical standards.

So why was He's work so ethically problematic?

The Atlantic piece lists 15 different answers to that question. Some are stronger than others, but all are worrisome.

I'll mention just a few here:

-- He didn’t address an unmet medical need. In other words, He was just doing this stuff because he could.

-- He introduced three mutations into the genomes of the two babies, but it’s not clear what those new mutations will do. So he was playing medical Russian roulette for no good reason.

-- There were problems with informed consent. As the story note, "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.'”

The human body -- its physics, its chemistry, its mysteries -- is a marvel that deserves to be studied and appreciated. But in all such studies there must be ethical guidelines, which often, though not always, find their roots in the teachings of religion. In this case the scientific, ethical and religious worlds need to be clear that this kind of freelance work will not be tolerated.

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THE FORWARD GOES, UH, FORWARD?

The Jewish newspaper, The Forward, is about to quit its print publication to go entirely online. Sort of makes me wonder why so often progress produces sadness. Well, it's an important news source. May it survive, if only in cyberspace. If you're interested, here's a sort of farewell column from editor-in-chief Jane Eisner, who has been asked to leave her position.