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  • BIOETHICS FORUM ESSAY

CRISPR in China: Why Did the Parents Give Consent?

The global scientific community has been unanimous in condemning Chinese scientist He Jiankui, who announced last week that he used the gene-editing technology called CRISPR to make permanent, heritable changes to the genes of two baby girls who were born this month in China. Criticism has focused on Dr. He’s violation of worldwide acknowledgement that CRISPR has not been proven to be safe and ready to use in humans. Because CRISPR edits the actual germline, there are safety implications not only for these two girls, but for their progeny. There is also fear, expressed by the American Society for Reproductive Medicine, that this one renegade scientist could spark a backlash that would result in overly restrictive regulation.

Largely missing from the discussion is whether the twins’ parents understood what was happening and the unproven nature of the technology.  Was the informed consent process adequate, and if so, why on earth would they have given their consent?

This couple’s problem was that the father has HIV.  He says he used CRISPR to edit the embryos’ genomes to make them more resistant to the HIV virus. But sperm washing followed by artificial insemination is the accepted avenue to safe conception when a father is HIV positive, and is less technologically complex than what Dr. He claims to have done: in vitro fertilization followed by editing the genes of the embryos before transferring them to the mother’s uterus.   Once the girls were born, basic precautions, such as not sharing toothbrushes, would keep them safe from being infected by their father. Further, compared to sperm washing and artificial insemination, IVF poses greater risks and burdens to the woman, who must take fertility drugs and then undergo the discomfort first of egg retrieval and then of embryo placement.  So there seems to be no problem this couple was facing to which gene editing was an appropriate response, even if it had been proven and safe.

Thus, in addition to all the other concerns about He’s unethical behavior, we should be worried that he misled the parents about the extent of the danger posed by the father’s HIV status and the existence of accepted modalities for addressing those issues. Did He, for example, fan unwarranted parental anxieties about the possibility of a child being infected by the father in the course of normal parenting activities?  Did the parents understand that there are safe and accepted ways to enable HIV men to become fathers?  Did He explain that this technology is so new that it is impossible to know the risks, not only to their daughters, but to their future grandchildren and onward?  He claims that he told the parents of the risks involved, but that is simply not possible, because the risks are not known.

CRISPR has awesome possibilities, for good and for ill.  It is appropriate to take it slowly, as all responsible scientists have been urging.  But as we contemplate the full sweep of CRISPR’s implications for mankind, we should not lose sight of the individual people who are always at the heart of medicine: the men and women, parents and children, who seek healthier and better lives.  These persons need to be protected by the most stringent concerns for their autonomy as they grapple with difficult decisions.  Good ethics, and good medicine, always begins with the individual.

Dena S. Davis, JD, PhD, Hastings Center Fellow, is the endowed presidential chair in health and a professor of bioethics and religion studies at Lehigh University.

 

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Published on: December 7, 2018
Published in: Children and Families, Clinical Trials and Human Subjects Research, Gene Editing, Hastings Bioethics Forum

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6 comments on “CRISPR in China: Why Did the Parents Give Consent?

  1. Stephen A Phillips MD, MA Bioethics on

    We do not know how well the parents were informed, but the possibility exists that they were fully informed and chose to participate in spite of lack of medical need and unknowable risk because it was what they wanted. It is not uncommon for parents to make reproductive decisions based on their desires more than what is best for the child. Sex selection is one example of that. They may have desired to have children with increased resistance to HIV even though they knew they were not at increased risk. That desire may have taken precedence over the welfare of the children they created. I am concerned that the desire for enhancement will drive the use of gene editing in human embryos without regard to the risk.

  2. Barbara J Culliton on

    I am struck by the ‘superior’ tone of the article. ‘Why on Earth would the parents give consent?’ It’s presumptuous to assume, with no information, that the parents are either ignorant or that they were misled. It is possible that they were fully informed and made simply made a choice that many scientists wish they had not made.

  3. Karen Patricia Woodbyrne on

    I’m also unhappy with the tone of the article. I have been prescribed MANY medical procedures and operations in which the full range of possible risks and outcomes were NEVER explained to me. Why do drug manufacturers’ usage instructions change, if all risks are known before the product hits the market? I have had a long life made miserable by a disease that is incurable and treatment resistant. Unfortunately, I had a child before I knew of the disease and passed it on to her. Would I have given consent to an editing procedure had it existed? Damn right I would have. And, I’m an M.B.A. with a high genius IQ, so don’t pull that “ignorance and misled” stuff on me. If the parents were merely informed that the outcome would be unknown, that’s enough for me.

    • Dena Davis on

      Of course it makes sense to use gene editing to avoid burdening a child with a disease. But that does not seem to have been the case here.

  4. Bonnie Steinbock on

    I thought we don’t even know if the twins were born, or if the gene editing actually worked, much less whether the parents were appropriately counseled.

  5. Natalie Kofler on

    I think the tone of this article is just fine. The point being made is that the gene edit allegedly used was not to cure disease. And thus the risk/benefit ratio was not favorable enough to warrant the experiment. I want to emphasize experiment because that’s what this was. Scientists didn’t know nearly enough about the risks of this technology to move forward with human germline editing. That being said, I think another important question to raise is what reproductive alternatives did the parents have access to? IVF and sperm washing is expensive! I am not aware of the financial status of the parents, but it’s possible that by agreeing to participate in this experiment was the only way they could safely have children, gene edited or not. In which case, consent may have been gained through of undue persuasion. And that adds another deeeply concerning ethical layer to this case.

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