Sebastian's Point

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Recalling our Principles: Human Embryos, Ethical Stem Cell Experimentation, and American Purpose

David Franks. Ph.D. |  23 September 2021

When the Stars Wars-universe show The Mandalorian debuted, viewers were captivated by the fate of “The Child,” who was rescued from nonvoluntary scientific experimentation by the title character. The Mandalorian’s self-endangering efforts to keep The Child out of the vivisecting laboratory provided visceral, dramatic energy throughout the first season.

 

Vague memories of dangerous and lethal human experimentation were perhaps evoked by the menace in the show’s scenario: the Tuskegee syphilis study,[1] the fate of Muslim Uighurs and others in the Chinese gulag,[2] the Nazi “Angel of Death” Mengele.[3] There are still researchers who believe it justifiable to sacrifice some human lives to increase scientific knowledge and medical efficacy.

 

And so it is that this May, the Illinois-based International Society for Stem Cell Research (ISSCR), the world’s self-appointed regulators of such research, lifted its own previously imposed 14-day rule, which restricted experimentation on human embryos to the first two weeks after fertilization.[4] That rule itself had not been a real compromise, as embryos could not be kept alive for that length of time at the time of its promulgation. So, it is not a surprise that with overcoming that technical limitation, so too would the supposedly ethical limitation be overcome: the dropping of the rule reveals that technical limitation was the only real hedge all along; ethical limitation was never an actual factor.[5]

 

Human embryos do not have the baby-Yoda cuteness of Grogu, but they are individuals of the human species—as a human sperm or egg, or a corpse, is not. If asked when you first emerged into existence, your answer according to modern embryology would be, “at fertilization”—even if you are one of a pair of identical twins, in which case that starting point would have been shared. Never before seen in the history of the world, a new genetic code—directing the construction of a unique human body—came into being when the chromosomes of a sperm and an egg from your father and mother fused.

 

As Americans, we have a shameful history of human experimentation we have not taken to heart. Even with forced sterilizations and the Tuskegee airmen to spur our conscience, we have not yet recognized in law that lethal human experimentation should not be on the table at all. Remembering its own history of horrors, but instead taking it to heart, Germany, for example, has proceeded down a different path.[6] In the shadow of, and in opposition to, the Nazi lie that there is such a thing as human “life unworthy of life” (lebensunwertes Leben), the ethos of German’s Basic Law, its constitution, makes the protection of bare human life a fundamental concern.[7] Moreover, this earnestness with regard to the right to life has ramified into Germany's Embryo Protection Act, which deprives researchers of human embryonic subjects on which to experiment—by regulating IVF in such a way that no “spare” embryos are allowed to be generated in the process and by banning outright the creation of embryos for nonreproductive purposes. Beyond that, Germany’s Stem Cell Act seeks to balance freedom of research with respect for human dignity and the right to life. It allows but highly regulates embryonic stem cell lines produced elsewhere and imported into Germany before 2007. (This is a balancing act reminiscent of that performed by President George W. Bush in his decision on the federal funding of embryonic stem cell research announced a month before 9/11.[8])

 

So. Germany forbids embryo-destructive stem cell research. Why? One way to understand Germany’s ethos is to note a great irony of history: the Nuremberg Code is now more honored by Germany than America. That Code is a watershed document defining the ethical parameters of human experimentation, part of the judgment handed down by an American military tribunal in the “Doctors’ Trial” of Germans complicit in human experimentation.[9]

 

American researchers need to be reminded of these ethical basics. However, in the end, it is up to the citizens of the American republic as a whole to guard against violations of human rights by elites who do not recognize ethical limitations on the will to power and the will to know. We must exercise our vigilance at least through the instrumentality of law, as Germany has done. For the topic at hand, four of the ten principles of the Nuremberg Code are especially salient and should guide legislation governing stem cell research:

 

1. The voluntary consent of the human subject is absolutely essential.

 

5. No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur.

 

7. Proper preparations should be made, and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death.

 

10. During the course of the experiment, the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill, and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject. 

 

Human embryos represent the barest human life. If ethical principles exist, they exist to protect the most powerless, especially when they are threatened by the calculations of those with power over them. If that human individual cannot speak up for him or herself, the voice raised on his or her behalf must do so to advocate for that individual’s continued development. What kind of society would say on behalf of the most powerless, the ones most dependent on our voices: “I consent to their destruction”?

The other three principles depend on the most basic ethical recognition: killing humans is not a permissible means to advance the scientific enterprise.

These principles of the American-promulgated Nuremberg Code should be repatriated in American law. We have forgotten what we knew, for a few moments, when confronted by Nazi atrocity: some evils cannot be countenanced, no matter the circumstance. With ISSCR's revocation of its own already ethically unmoored 14-day rule, it is up to the citizens of this republic to remember what it means to be ethical, civilized, humane. Big Pharma wants patentable therapies, and that means preferring human embryonic stem cells (hESCs) obtained by destroying the smallest human lives rather than self-donated and other ethically obtainable induced pluripotent stem cells (iPSCs). A scientific drive for knowledge regardless of ethical limits has converged with a corporate drive for profit in a juggernaut that kills humans without a second thought. It is time for American democracy to rehumanize the scientific enterprise and make it serve the welfare of each and of all.

 

_________________________

*My thanks for valuable feedback to Tim Furlan, Burnett Family Distinguished Chair in Ethical Leadership at the University of St. Thomas (Houston) and senior editor of Pediatric Ethicscope.

[1] For a basic timeline, see the CDC’s account: https://www.cdc.gov/tuskegee/timeline.htm.

[2] For an eyewitness account from someone who escaped, see https://www.haaretz.com/world-news/.premium.MAGAZINE-a-million-people-are-jailed-at-china-s-gulags-i-escaped-here-s-what-goes-on-inside-1.7994216.

[3] For a quick overview, this information from the United States Holocaust Memorial Museum is helpful: https://encyclopedia.ushmm.org/content/en/article/nazi-medical-experiments.

[4] As usual, the Charlotte Lozier Institute explains the situation well, in Edie Heipel’s “ISSCR’s Reversal of the 14-Day Rule” (June 25, 2021): https://lozierinstitute.org/isscrs-reversal-of-the-14-day-rule/.

[5] See p. 33 of Human Embryo Research Beyond Day 14: Ethical Questions and Considerations by Ana S. Iltis, Inmaculada de Melo-Martin, and Jason Scott Robert (February 2019), a quite useful report: https://www.bakerinstitute.org/media/files/files/20b9e242/chb-pub-greenwall-ethics-021219.pdf.

[6] In “The Barest Human Life: IVF, Embryos, and Political Responsibility,” Journal for Bioethics in Law and Culture Quarterly (Winter 2020), I conclude with a brief comparison of the American and German approaches to human embryos: https://www.societyofstsebastian.org/winter2020-ivf-frank.

[7] A helpful précis of German law touching on this matter can be found here: https://understanding-stemcells.info/Ethics/LegalBasics.aspx. Germany’s position is far more humane than America’s.

[8] A useful comparison of different national policies concerning stem cell research can be found here: https://www.futuremedicine.com/doi/10.2217/rme-2019-0138.

[9] On this matter, there is a good précis from the United States Holocaust Memorial Museum: https://encyclopedia.ushmm.org/content/en/article/the-nuremberg-code.

David Franks, Ph.D.

Chairman of the Board

Massachusetts Citizens for Life

Directs its Lincoln Forum for Human Dignity