What are the limits on private science?

There has been an outcry about the decision by a Chinese scientist He Jiankui to use the new CRISPR gene-editing technology to modify the genes of two human embryos before they were placed in the mother’s womb. He had disabled a gene known as CCR5, thus blocking a pathway for the HIV virus and thus gave them some immunity from that disease.

Such human experimentation violates ethical guidelines for scientific research.

Some scientists at the International Summit on Human Genome Editing, which began on Tuesday in Hong Kong, said they were appalled the scientist had announced his work without following scientific protocols, including publishing his findings in a peer-reviewed journal. Others cited the ethical problems raised by creating essentially enhanced humans.

Qiu Renzong, a bioethicist and emeritus professor at the Chinese Academy of Social Science in Beijing, said He’s decision to work outside established and supervised scientific protocols could taint the reputation of Chinese science.

“Of course it’s not ethical,” said Qiu, after publicly criticising He’s work before the several hundred people in attendance. Qiu said He’s university, the Southern University of Science and Technology in Shenzhen, had rejected his request to perform the experiment. That led the Stanford-educated He to find a private hospital outside the academic system to apply his research. “Clearly it is a fraud,” said Qiu. “Maybe he fabricated a form, and found people to sign it.”

Most research institutions, especially those funded by governments, are required to have Institutional Review Boards that must examine any experimental proposal on living things to ensure that they meet ethical guidelines before they are approved. Such bodies have eliminated many of the cruel and inhumane practices that once existed in animal research.

But once you go outside those bodies and can find private organizations that are willing to support you, then as far as I am aware it is only civil and criminal laws that can prevent such experiments. We saw in the case of the secret study on twins and triplets deliberately separated at birth that a researcher was able to carry out the study by getting private foundations to fund it and having a private adoption agency agree to participate.

This makes we wonder if we are entering a new phase of research on animals and humans where rapid advances in technology are enabling scientists to do things that nobody has been able to do before. Ambitious researchers who want to make a name for themselves by being the first to do something new may be impatient with the slow pace and tight restrictions of the traditional approval processes and try to circumvent them by going straight to private organizations that place fewer restrictions on them. If so, we are likely to see new civil and criminal laws to close that loophole.


  1. says

    I don’t get the concern. The history of medicine is humans experimenting on each other and themselves. In the last couple years I’ve read Mukherjee’s emperor of all maladies and Hager’s The Demon Under the Microscope and it sounds like virtually all progress in virology and cancer treatment (at least) has been pretty much human experimentation -- with some but mostly minimal controls.

    I understand that it’s a serious responsibility and that it’s immoral to make such decisions for someone who cannot consent, but that’s never stopped anyone.

  2. Mano Singham says

    There are serious concerns about, at the very least, informed patient consent. The IRB process requires all manner of controls to ensure that such consent is obtained. The ICIJ has just released a report about the way that implants have been experimented with on people that have had serious negative health effects on them.

    The fact that advances have been achieved by some these methods is of little comfort to those whose health has been seriously compromised by such experiments.

  3. lanir says

    @Marcus: I understand what you’re saying but doesn’t that sound a lot like an argument based on tradition, in favor of something that can have serious negative effects on others?

    I’m transplanting some logic here and feel free to tell me I’m wrong, but I’m just thinking if it’s a lousy argument when we’re talking about racism then it might be a lousy argument when used with other topics too. Logic is hard and I’m certainly capable of screwing it up.

  4. says

    lanir: it does. I’m not comfortable with the Chinese doctor’s actions, but I think that the horse was going to leave the barn before the barn was built. Or something.

    I read something the other day about amniocentisis being used to determine gender and terminate the pregnancy if the child is a girl. Doctors are doing horrible shit all the time, in other words. It’s a huge problem.

    I’d favor some kind of regulation, but I think it’s not going to affect anything. 🙁

  5. says

    That’s a depressing take, Marcus.

    I’m not sure how I feel about laws which would ban private experimentation on blastocysts, so long as they remain blastocysts. Maybe it’s necessary, maybe it’s not. For fertilized ova or for blastocysts that receive experimental interventions and then are allowed to develop further, I think that there should be some rules, though I’m not knowledgeable enough to know what they should be.

    On the other hand, I’m probably fairly well qualified to discuss the ethical principles that should guide those decisions.

    I think that informed consent of any future parents is necessary. I think that experimentation that considers some blastocysts more valuable than others is wrong. I think that a guarantee that any potential children are taken care of for life, if necessary, including all medicare an other reasonable expenses. This ethical responsibility would be analogous to a parent’s duty to provide child support. On that one, I think I do have enough practical knowledge to recommend not only a guiding ethical principle but also a reasonable policy: money sufficient to care for the care of any resulting persons has to be placed into escrow in advance. That’s potentially a lot of money. But if the research is important enough and people want to do that, they theoretically could. For practical reasons, we would also have to make sure that people, corporations, trusts and the like who knowingly fund such research would also be on the hook for these escrow funds -- not merely the people in lab coats.

    Finally, the experimenters could have no say in the adoptive placement of any resulting children. Doing so would allow them to place children only with parents who are willing to provide written consent for further experimentation after birth. That’s wrong. Any kids should be placed with loving parents who then have the same legal right as any parent to withhold consent for participation in medical studies.

    That’s just for starters, but with clear ethical floodlights we might be able to see clearly enough to establish a reasonable and limiting legal framework, violation of which may entail criminal liability, civil liability, or both.

    I think that would be valuable, and it need not be regulation that “isn’t going to affect anything”.

  6. Jazzlet says

    @Crip Dyke

    I think that experimentation that considers some blastocysts more valuable than others is wrong.

    I am not sure how that can work. One of the reasons many people are appalled by what He did is that there seems to be a concensus that if/when this kind of work is permitted, it should be on fatal single allele diseases. At that point blastocytes that still end up with the disease allele will necessarily be less valuable as if allowed to progress the child would have the disease.

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