The family of Henrietta Lacks has settled with Thermo Fisher over the use of their relative’s cells, a staple of tissue culture research. It was entirely confidential, which is unfortunate — it feels like it might have been a “here’s a lump of money, now shut up and go away” sort of deal, which will be a short term benefit to the family, who deserve some compensation, but now presumably the ethical discussion will just disappear.

There was an earlier agreement that I think was more significant.

Lacks’ family members have never shared in any of the untold riches unlocked by the material, called HeLa cells, and they won’t make any money under the agreement announced Wednesday by the family and the National Institutes of Health.

But they will have some control over scientists’ access to the cells’ DNA code. And they will receive acknowledgement in the scientific papers that result.

The agreement came after the family raised privacy concerns about making Henrietta Lacks’ genetic makeup public. Since DNA is inherited, information from her DNA could be used to make predictions about the disease risk and other traits of her modern-day descendants.

Under the agreement, two family members will sit on a six-member committee that will regulate access to the genetic code.

“The main issue was the privacy concern and what information in the future might be revealed,” David Lacks Jr., grandson of Henrietta Lacks, said at a news conference.

“Untold riches” is quite an exaggeration. Cell lines are mundane tools that also require ongoing investment to maintain, and while I’m sure the companies profited excessively, it wasn’t quite on the scale of selling Oxycontin. But yes, the Lacks family should get a cut.

More important than money, though, is that the family that shares Henrietta Lacks’ genetic heritage should be acknowledged and share stewardship of that legacy. I’d want that kind of control over my body, and would be resentful of any profit-making venture that stole that from me or my children. That’s the precedent we need.

One of the methods used to measure in-breeding in cheetahs was to to do skin grafts. Transplant a small patch of skin from one animal to another, and if there was no tissue rejection, then they were likely to be genetically similar. Those were routine experiments done on animals, where you don’t need to explain to the subject why you’re doing these bizarre experiments.

I guess some scientists in the 1970s thought Inuit were equivalent to experimental animals, because they were doing the same thing without getting informed consent.

Nearly 50 years ago, the hamlet of Igloolik was the site of a boom in scientific research, all part of a larger project called the International Biological Program. While the program was aimed at answering a wide array of scientific questions, much of the work in Igloolik focused on Inuit.

“We would do all these different kinds of things for a researcher,” said former Nunavut premier Paul Quassa, who grew up in Igloolik.

In the early ’70s he was a young man, spending his days going to school and hunting. He remembers researchers being in the community and doing experiments — he says some were merely inconvenient and annoying, but others were more invasive.

Quassa remembers being taken to a research building with his uncle and his cousin. There, they were told to roll up their sleeves.

“They took pieces of our skin, from another person, and then they put into ours,” said Quassa.

“They had a little circular knife or blade, and they would just start twisting it and then you could see the skin being cut in a circle.”

I don’t do experiments on people, but I would think a fundamental principle of basic bioethics is that you would explain what you were doing, why you were doing it, and you would share the results with your subjects. These researchers don’t seem to be aware of the concept.

“It was an earlier time,” I can hear the science advocates saying. It was only 50 years ago! Scientists were well aware of the controversy of the Tuskegee project — news of that horror broke in 1972. Anyone doing research on human subjects should have known about it.

It’s estimated that researchers did the skin grafting experiment on more than 30 Inuit from Igloolik, including Lazarie Uttak.

“I was grafted with part of the skin of my sister,” said Uttak. “I feel like we were being used.”

Uttak, 67, still lives in Igloolik and says at least 15 of the people who were experimented on are still alive in the hamlet today.

“We talk about this sometimes,” he said. “It was really unfair. We never got any information from them about why this was happening and the reason why they did it. I never found out.”

We know the name of one of the researchers, Dr John Dossetor.

Dossetor was a professor of medicine at the University of Alberta at the time. He went on to become an expert in medical ethics.

In his book, Dossetor writes that his research in Igloolik received “community consent,” which he said was granted by elders via a non-Inuk translator. At the time Dossetor felt that was sufficient.

What the hell is “community consent”? Does that mean that the mayor of Morris, Minnesota could tell a researcher that it’s OK to do experiments on me? I think the problems with that idea are obvious. They sure are obvious to the Inuit subjected to these experiments.

Quassa shot back at the doctor’s concept of “community consent.” He questions what details were actually shared with locals in Inuktitut, and dismissed the idea that elders could unilaterally grant consent for invasive medical procedures.

“I’ve heard of scientists doing experiments on monkeys — they use animals to do a lot of experiments for the betterment of humankind,” he said.

“We are not monkeys, we are not animals, we are another human being that deserves respect.”

Now I’m wondering what experiments are being done on isolated communities here in the ’20s that will be revealed in the 2070s that will horrify everyone, and whether they’ll try to defend themselves by saying that we didn’t know better in 2020.

You know, we do.