Legally binding research ethics exist to, among other reasons, protect the health of subjects, promote safety, and generally ensure that we always respect human dignity.
But increasingly, when it comes to regulating potent cutting-edge biotechnologies,“the scientists” insist that voluntary guidelines are sufficient to the task. They are not — as the recent birth in China of two germline-edited babies demonstrated.
Now, the Wall Street Journal has exposed other Chinese ethical failures in the field. The whereabouts of human subjects whose genes were edited to cure disease are unknown, and potential lethal side effects from the engineering in at least one case went unexplored. From the story:
Chinese scientists have raced ahead in experimenting with gene-editing on humans in the last few years, using a powerful new tool called Crispr-Cas9 to edit the DNA of dozens of cancer patients.
Information gathered by The Wall Street Journal shows one such trial has lost touch with patients whose DNA was altered, alarming some Western scientists who say subjects should be monitored for many years.
In another trial, an Indian man’s cancer improved but he suffered a heart attack and brain stroke; Chinese doctors didn’t investigate the cause, the deceased man’s family said.
There is great peril here. The bioethicist William Hurlbut worries that we could be entering an era of “outsourcing ethics,” by which he means Western universities and companies circumventing our laws by conducting research in countries with loose standards. At least to a small degree, ethics outsourcing has already started.
Such research anarchy (if you will) is dangerous. CRISPR gene editing and other fast advancing biotechnologies — such as the creation of artificial life forms — are among humankind’s most portentous and powerful inventions. It is not overstatement to state that they rival the splitting of the atom in potential benefit and peril.
If we want to avoid runaway experimentation, we need binding and enforceable international-ethics protocols. But the Trump administration continues to be derelict in its responsibility to lead.
I know the president has a lot on his plate. If he doesn’t feel up — or motivated — to undertake this task, he should delegate the biotechnology portfolio to Vice President Pence or appoint an administration “czar” to be the administration’s wrangler on the issue. Doing nothing yields our moral standards to the lowest denominator, certainly not a strategy that will make America great again.