Thirty-two million Americans currently have health conditions linked to genetic defects, nearly all of which can be corrected by genetic editing with CRISPR-Cas9 technology. Opponents of gene editing abound, from those who point to their potential role in increasing the privilege gap between the rich and poor, to people who object morally to the idea of humans meddling with their own DNA, to pharmaceutical companies whose profits would be threatened by a reduced need for medication. However, after analysis of the ethicality of genetic editing technology with the frameworks of common good, utilitarianism, and fairness, it is evident that the eventual species-scale benefits that will be brought about by the technology outweigh its risks and flaws.
Main Street in Cambridge, Massachusetts, is no stranger to biotech companies promising to change the world. One of these sleek structures, however, houses a company developing treatments for an unusual market: the entire human race. CRISPR Therapeutics’ treatments alter patients’ DNA to attack potential diseases, establishing the company as a leader in the exploding field of gene therapy. This approach to disease eradication has garnered significant interest in the medical community because around 32 million Americans currently have health conditions linked to genetic defects, and nearly all of these defects could be corrected by genetic treatments [1,2]. Gene editing differs from conventional drug treatments in that it also allows scientists to treat nominally healthy DNA by imbuing resistance to a variety of diseases[3, 4].
These unprecedented capabilities present leaders in biotech with an equally unprecedented dilemma: should we edit our own DNA? Unfortunately, such paradigm-shifting technological advancements can be overshadowed by socioeconomic consequences. Innovative designs typically enter the market at prohibitively expensive prices and thus are only available to the ultra-wealthy. The majority of society may depend on computers now, but IBM debuted the general-purpose computer in 1968 at $2 million; similarly, LASIK laser eye treatment cost approximately 275% more at its introduction than it does in the present day [5, 6]. Gene editing will likely bear a similarly astronomical cost, and thus cast doubt upon the necessity of the technology’s pursuit. However, leaders in genetic editing research and development have an ethical obligation to pursue human application of CRISPR-Cas9 technology, as the unparalleled species-scale benefits unlocked by human applications of genetic editing technology outweigh the short-term widening of socioeconomic inequalities.
CRISPR may only make edits on the microscopic level, but because DNA is so crucial to all life, gene editing can result in macroscopic benefits. CRISPR, or Clustered Regularly Interspaced Short Palindromic Repeats, refers to short segments of DNA stored in bacteria to identify hostile viruses. Scientists use customized versions of this technology to fashion guide RNA molecules (gRNA) that hunt for a specific genetic sequence. Coupled with a protein called Cas9, gRNA acts as a pair of genetic scissors and snips out matches in the DNA, sometimes also inserting a more desirable replacement . Specialists have already successfully used this system to genetically modify a variety of organisms, from bacteria to citrus trees–and even humans . Over 7,000 different genetic diseases, from sickle cell anemia to cystic fibrosis and muscular dystrophy, spawn from DNA variations as minute as a single misplaced nucleotide base. Gene editing allows scientists to correct any of these diseases, as well as hereditary blindness, a variety of flus, and even some cancers. According to the American Journal of Managed Care, about 10% of the population of the United States has a “rare condition linked to a genetic defect”–and CRISPR could quite possibly cure them .
As mentioned above, CRISPR will be no different than other revolutionary technologies that debut with far-from-affordable price tags, but federal regulations can minimize the impact of these high prices. The first gene therapy medication recently cleared FDA examination at $2.1 million per patient; while no CRISPR treatments have yet reached the market, the cost will likely remain the same when it becomes more widely available . But many technologies then drop in price once manufacturing scales and initial patents expire, which allows a slew of other corporations to develop “generic brand” versions at reasonable costs. The patent war on CRISPR technology has only begun, though, meaning that gene therapies will not be able to reach the public domain for around 20 years . In the meantime, CRISPR will remain at a reduced level of access that heightens inequality between the wealthy and the general public. Costs will likely remain astronomical as gene therapies transition into commercialization, but federal regulators can and must expedite accessibility once the patents expire. These initiatives could include driving down cost of treatment development, production, and implementation; creating partially subsidized voucher programs for at-risk populations; and establishing relationships with insurance providers that previously did not cover genetic treatments. Until significant government action is taken, however, CRISPR therapies will likely not be feasible for the general population.
When examined in the context of the common good, the question of human genetic editing has clearly disparate immediate and long-term effects. Choices that are desirable in this ethical framework benefit the entire population, not a specific subgroup. The wealthy will likely have access to resistances and treatments initially beyond the reach of the world’s majority; in this instance, the human implementation of genetic editing technology does not benefit the common good. However, the treatment will likely benefit increasingly lower income brackets when prices are pulled down by supply and demand trends, expiring patents, and governmental regulation. Ultimately, the benefits of this technology will be accessible on a species-wide scale, rebutting the arguments that gene editing does not benefit the common good, which are usually based on its exclusivity. Therefore, in the long term, the initial human application of this technology is an ethical pursuit within this framework.
The dilemma of pursuing the human application of CRISPR technology can also be approached using the utilitarian ethical framework. Since this technology can benefit both at-risk and healthy patients, the stakeholders are the general human population. Even in the early stages of its commercialization, CRISPR therapy’s ethicality mostly lies in the receipt of its benefits, as opposed to whether or not it creates them. While not all stakeholders would initially profit, those inflicted with ailments curable by CRISPR would not be made any more susceptible by not receiving artificially enhanced disease resistance. CRISPR therapies thus do not inflict any direct harm on this population of stakeholders, as they will eventually benefit when the price of this technology drops to accessible levels. Utilitarianism prioritizes the maximization of benefits and minimization of harm; because the pursuit of gene editing technology results in few burdens and eventually benefits all stakeholders, CRISPR treatments are ethical under the utilitarian framework .
However, evaluating the proposed path forward for this genetic editing technology from a standpoint of fairness demonstrates that gene editing may not be wholly virtuous. CRISPR treatments may not do direct damage to those unable to afford them, but a wealthy family could pay for a single gene-editing procedure that cures sickle cell anemia while a poverty-stricken family would have to incur debt for yearly transfusions. In another case, one child may have their genes edited to treat cystic fibrosis while another child is left to suffer, solely because of the family they were born into. Until the price of such editing treatments is globally accessible, the implementation of this technology clearly produces unfair situations; in other words, it becomes unethical when examined with the framework of fairness. Once costs have settled to the point at which the whole world can use this technology, however, there will inevitably remain an uneven hierarchy of available treatments that still benefits the rich. Those who leapt at the (expensive) first chance to acquire CRISPR treatment will save their families’ future generations from hereditary diseases–as well as the cost incurred from these treatments, which presumably eclipses the treatment of more common conditions. On the other hand, the less fortunate will still have to opt for the more costly treatments, continuing inequality of genetic treatment into the indefinite future.
When simplified down to the question of whether a treatment should be developed or not, the answer may seem an obvious yes–but one must also evaluate any bias behind such judgment. Two important considerations to evaluate the degree of bias are the results of the technology becoming widely available and the outcome of publicizing its details. First, extensively expanding the availability of CRISPR therapies would only serve to shorten the period of unequal access to this technology. Competition between multiple firms would likely speed up development and could even mitigate some of the transient, less ethically desirable effects of commercialization; therefore, universal access to CRISPR would yield great benefits. Second, while advertisement of gene therapy might at first cause unrest due to its high price and implications of privilege, most anger would be directed at the circumstances rather than the technology itself. Such controversy would likely encourage attention towards mitigating costs, from the government, donors, or insurance agencies, and thus still result in overall good. Because both universal access and awareness will have positive effects for the general population, the pursuit of CRISPR development bears little bias towards one group or another.
Those who lead the charge in gene editing will face sharp backlash from some groups over the resultant widening of privilege gaps between the wealthy and working classes, critique by people who believe that humans were not meant to meddle with DNA, and resistance from giants in the pharmaceutical industry for threatening the need for a host of disease-related medications. However, if these scientists persevere, they will save millions of lives and improve the quality of life of untold millions more. As editing technology goes mainstream, it will cause a restructuring, patching, and augmentation of the human genome on a timescale that is unprecedented in the history of our species, as this targeting of vulnerabilities and flaws in our genetic code would be analogous to a rapid, highly targeted period of human evolution. If even a few genetic diseases become sections in history books sometime far in the future, those same history books will speak of the bravery of today’s leaders who pressed through the opposition in pursuit of their long-term vision for humanity. That is a legacy worth fighting for.
By Connor Powers, Viterbi School of Engineering, University of Southern California
About the Author
At the time of writing this paper, Connor was a fourth-year Aerospace Engineering major and Physics minor hoping to attend graduate school after completing his degrees at USC.
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Links for Further Reading