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Posted on December 7, 2018 at 8:40 AM

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 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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