In May of 2019 The New Bioethics carried a paper (purchase or subscription required) by Jennifer Gumer of Columbia and Loyola Marymount Universities, summarizing an argument against heritable genome editing (the kind in which an embryo’s genes are edited so that the change will be passed down to the subject’s descendants), based on Belmont principalism. A brief outline of the argument:
- Uncertainties about the safety of the procedure
make it highly unlikely at best that the principle of nonmaleficence (“first,
do no harm”) will be satisfied.
Even if the technique substantially eliminates unintended, “off
target” gene changes or mosaicism (some cells have the change, others do
not), uncertainty will remain about whether interactions between genes may be
altered, potentially beneficial positive effects of the “bad” genes
may be lost, or the edited gene may have different effects in different
environments. Further, the edited gene
will persist in the human population.
- At least, this concern would appear greatly to limit the number of genetic conditions that would be appropriate for heritable editing, to a few where a very discreet genetic abnormality that causes a devastating disease is well understood. Such limits would almost certainly be unenforceable, as efforts to edit genes that clearly cause disease would be expanded to edit genes that predispose to or increase risks of disease, or event to insert or add genes thought to protect from disease. The additional complexity of the tasks would further confound attempts to calculate risks.
- The justice of heritable genome editing could
well be limited by:
- The costs, either in the individual case or more broadly on the health care system because in vitro fertilization would almost certainly be required to carry out the heritable editing;
- Diversion of resources from dealing with environmental or socioeconomic conditions with greater overall impact on the health of the human population;
- A bias against people with disabilities may be fostered.
- If heritable gene editing included efforts to enhance traits perceived desirable, harms could arise from miscalculations about whether such enhancement truly yields a better life (e.g., if one could be genetically altered to require less sleep), or pressures on the offspring to perform up to enhanced expectations, again violating the principle of nonmaleficence.
- Efforts at enhancement would create eugenic pressure to extend the enhancement widely through the population, and/or create a split-class society of (presumably wealthy) genetically enhanced “haves” and unenhanced “have nots,” violating the principle of justice.
- Limiting heritable genetic editing to the few cases of single-gene-caused serious diseases would benefit only a few affected individuals and their parents, by helping the latter to have genetically-related, unaffected offspring, while risks such as those outlined above could affect many, either by creating direct risks in the population or indirect risks of lost opportunities from deferral of attention to other health and societal problems.
- Likewise, an appeal to autonomy fails. Procreative freedom has not yet been held to include a right to bear a genetically-related child, much less one free of undesired traits, and even if such a right were recognized, it would not be unbounded, but would be subject to limits set by concerns such as well-being of the resulting child and societal concerns. Moreover, parental exercise of autonomy for heritable gene editing would limit the autonomy of society by potentially exposing others to unintended risks without their consent, and would limit the autonomy of gene-edited descendants, whose genomes would be determined at least in part by the decisions of their ancestors.
Thus, in brief, runs the argument. Like the utilitarian argument summarized in my February 6 post, these contemporary discussions are important to review from time to time. Further perspectives and analysis to follow in future posts.