By Karnik Hajjar (J.D. 2022)
When the movie Gattaca came out in 1997, it seemed more fantasy than science fiction. The idea of a society in which people could be born with enhanced genetics seemed far beyond the reach of science – the human genome had yet to be sequenced, and genetic manipulation had only been performed on bacteria and other simple organisms. The most complex endeavor to be attempted by the rapidly growing field of molecular genetics was the cloning of Dolly the sheep, done one year prior to the release of Gattaca[1].
Just over two decades later, the world of molecular genetics is vastly different. A protein complex discovered in bacteria, CRISPR-Cas9, has enabled scientists to edit genes at an unprecedented level of precision. While it has numerous medical applications, there is a mounting concern that it can be used for nonmedical purposes.[2] In her article A Brave New World of Designer Babies?, Sonia Suter describes what she terms “neoeugenics.”[3]
To understand “neoeugenics” and contemporary concerns, it is useful to briefly look at the history of the eugenics movement. The eugenics movement was a state-sponsored program that was designed to create “better fit” children through managing reproduction.[4] Eugenics advocates combined Darwinian theories of natural selection with Mendelian inheritance theories to intertwine the movement with the burgeoning science of genetics[5]. While early advocacy for eugenics began around 1900, the movement influenced state governments to pass various reproductive control laws in the early 1900s; the national government followed suit in the 1920s with laws controlling immigration and forced sterilization based on “biological inferiority.”[6]. State and national governments would require certain groups to avoid reproduction to avoid “genetically unfit” children, going so far as to require forced sterilization of some groups.[7] The eugenics movement declined in the World War II era, as its association with Nazism left it distasteful to the American public[8]. Suter notes that while we now have safeguards against the government-sanctioned violence that would characterize the eugenics movement, neoeugenics would be different because it is individual-level selection, in which parents are able to voluntarily make choices about their reproductive health and use of reproductive technology.[9] A neoeugenic approach to gene editing, however, still faces many of the same problems that the original eugenics movement in the United States presented.
Anna Zaret, in Editing Embryos: Considering Restrictions on Genetically Engineering Humans, describes the overlap as placing a focus on “desirable” and “undesirable” traits.[10] This forces society to make the distinction, ultimately resulting in traits of varying worth based on our preferences. Additionally, gene editing has been considered a way to solve societal problems– a problematic assumption that echoes the goals of eugenics.[11] Existing regulatory structures are inadequate for assuring ethical and effective research into gene editing and gene therapy. In the United States, there are three main categories of regulation: self-regulation by private research organizations, state-level legislation, and Food and Drug Administration (FDA) jurisdiction over genetic experiments on the basis that they are biotechnology products.[12] There is no federal-level regulation – Congress barred federal funding from going to embryonic research in 2005, which has prevented the creation of a robust system of regulation.[13] Each of these, however, comes with severe limitations that hamper the important conversation around regulating human gene editing. Self-regulation is open to problems of creating more relaxed regulations aimed toward the creation of marketable products. State-level legislation is insufficient because it allows for shopping around for “regulatory havens,” wherein unethical individuals would be able to take advantage of laxer regulation.[14] The FDA’s regulatory domain is limited to physical safety issues with products and not ethical issues or possible social harms.[15]
Zaret suggests three additional regulatory steps that could help close the gap: the revocation of the federal ban on funding, the creation of a committee to report legislative recommendations, and the creation of a federal entity that would have authority over both public and private sectors.[16] The collective goal of these three steps is centralized regulation. A federal body would be able to research the social and ethical issues created by embryonic research and not only impose regulations but educate the public. It could be broadly expanded to promote public access to reproductive health and encourage dialogue about neoeugenic uses of gene editing.
In the near future, GATTACA could be viewed as a warning tale. Gene editing technologies have made this an exciting time for molecular medicine and have the capacity to positively impact medicine and scientific research. Those same technologies, however, can be used to dress up principles long considered abhorrent: the eugenicist idea of perfection and the cutting of undesirable traits that render whole groups subhuman. It is important that the limited regulatory framework that currently exists is recognized so that research and medicine that is fair and ethical can be emphasized.
[1] See Robert G. McKinell & Marie A. Di Bernardino, The Biology of Cloning: History and Rationale, 49 BioScience, Nov. 1, 199.
[2] See What are genome editing and CRISPR-Cas9, U.S. Nat’l Library of Med. (November 26, 2019), https://ghr.nlm.nih.gov/primer/genomicresearch/genomeediting [https://perma.cc/8QQY-HUHQ]; see Sonia M. Suter, A Brave New World of Designer Babies?, 22 Berkeley Tech. L.J. 897, 929 (2007).
[3] Suter, supra note 2, at 922.
[4] Eugenics, Stanford Encyclopedia of Philosophy, https://plato.stanford.edu/entries/eugenics/ (last visited Nov. 27, 2019).
[5] Suter, supra note 2, at 905.
[6] Id. at 907
[7] Stanford Encyclopedia of Philosophy, supra note 4.
[8] Suter, supra note 2, at 915.
[9] Id.
[10] Anna Zaret, Editing Embryos: Considering Restrictions on Genetically Engineering Humans, 67 Hastings L.J. 1805, 1826 (2016).
[11] See id.
[12] Id. at 1829.
[13] Id. at 1828.
[14] For more information on regulatory havens and their role in gene editing, see generally Ping Wang et al., Gene Therapy Policies Can Strike an Ethical Balance, Law360 (May 3, 2019 3:05PM), https://www.law360.com/articles/1155539/gene-therapy-policies-can-strike-an-ethical-balance.
[15] Zaret, supra note 10, at 1828.
[16] Id. at 1831-32.
