|Year : 2020 | Volume
| Issue : 1 | Page : 17-21
A human rights analysis of clustered regularly interspaced short palindromic repeats germline-editing for disease prevention
Lance Garrett Shaver1, Amit Sundly2, Abdullah Omar Saif2
1 Faculty of Medicine, University of British Columbia, Vancouver, Canada
2 Division of Community Health, Faculty of Medicine, Memorial University of Newfoundland, St. John's, Canada
|Date of Submission||02-Dec-2020|
|Date of Acceptance||17-Dec-2020|
|Date of Web Publication||31-Dec-2020|
Lance Garrett Shaver
207-1618 North Dairy Rd, Victoria BC
Source of Support: None, Conflict of Interest: None
Our purpose is to discuss ethical concerns with disease prevention applications of CRISPR germline editing using a human rights approach. If applied towards furthering health, these tools may aid to prevent diseases, thereby improving health and reduce suffering. On the other hand, commercialization of this technology, such that it becomes accessible only to the wealthy few, may have the opposite effect. We argue that caution needs to be taken against the use of germline-editing technology for disease prevention, as unequal access to the technology might negatively impact the health of the population by perpetuating socioeconomic inequality. What were once diseases and immunities of chance could soon become diseases of the poor and immunities of wealth. Hence, if germline editing is to be used for disease prevention, commercialization must be resisted, and efforts must be made to make it available and accessible within the human rights framework.
Keywords: CRISPR, gene editing, health inequalities, human rights, population health
|How to cite this article:|
Shaver LG, Sundly A, Saif AO. A human rights analysis of clustered regularly interspaced short palindromic repeats germline-editing for disease prevention. J Public Health Prim Care 2020;1:17-21
|How to cite this URL:|
Shaver LG, Sundly A, Saif AO. A human rights analysis of clustered regularly interspaced short palindromic repeats germline-editing for disease prevention. J Public Health Prim Care [serial online] 2020 [cited 2022 May 27];1:17-21. Available from: http://www.jphpc.com/text.asp?2020/1/1/17/305986
| Introduction|| |
With the invention of modern genetic editing tools, society now has the ability to change the genetic code of our offspring through germline genetic editing. While still in its infancy, future technological advancement may give humankind the power to influence genetic outcomes that will have been hitherto left to chance biological processes.
Our purpose is to present a human rights analysis of the disease prevention aspects of the CRISPR gene-editing technology using the “equality for all” aspect of the framework. We also take the discussion beyond the arguments of ethics and discuss the embodiment of inequality and the onset of stigma and stereotyping that such technology may perpetuate. We further discuss how a human rights approach to using CRISPR germline editing for disease prevention can help preserve the human rights of individuals.
| Background|| |
Traditional gene therapies have focused largely on editing human somatic, or 'adult', cells. Research by Wu et al. has proven that genetic editing of zygotes or spermatogonial stem cells can cure disease in mouse offspring., However, the success of CRISPR gene-editing technology to edit human embryos, known as germline editing, has triggered wide-spread debate among ethicists and scientists about the future applications of such technologies. This technology came under further public scrutiny when He Jiankui, a scientist from China, claimed that he used CRISPR to make babies which were naturally immune to the human immunodeficiency virus (HIV). This event took the scientific community by storm and led to multiple investigations ending in a prison sentence for He Jiankui for illegal medical practice.
The main concern with the germline editing of embryos, in contrast to somatic cell editing, is that these mutations can be passed on to children. The Universal Declaration on Human Genome and Human Rights rejects the practice of germline interventions. Despite this declaration, however, Araki and Ishii estimate that only 29 countries ban germline modification, with 9 countries whose laws were ambiguous, and 1 country—the USA—whose laws were only 'restrictive'.
Current ethical statements by professional associations, bioethics commissions, and government bodies generally agree that clinical applications are nowhere near ready for clinical use, that there should be a worldwide moratorium on clinically applying this technology for the foreseeable future, and that there should not be research into germline editing for human “enhancement”. However, they also agree that translational research into germline editing for “therapeutic” applications is permissible, leaving some ambiguity around whether germline editing might someday become ethically and legally permissible for therapeutic purposes. Thus, while human germline editing at this stage seems unlikely to become widespread, it cannot be discounted, and its ethical implications must not be ignored by policymakers or scientists, especially given public support for use of germline editing in disease prevention. Indeed, public opinion polls have shown considerable public support for germline therapies to cure inherited serious or fatal diseases or reduce the risk of developing a fatal disease later in life. Most public concerns about germline editing are with respect to applications for human enhancement not related to disease.
The current critique of CRISPR-Cas9 gene-editing technology is either through the biomedical or the bioethical lens. Researchers have reviewed this technology with emphasis on biobanking, data sharing, bioethics,,,,,, informed consent, human rights,,,, social justice, and regulatory frameworks. Moreover, the existing literature collectively discuss the disease prevention and health enhancement aspects. We take a narrower approach and discuss CRISPR gene-editing technology within the boundaries of its disease prevention capacity.
| Disease Prevention Aspects of CRISPR Germline Editing|| |
Anticipated health benefits of such CRISPR gene editing technology are that it could reduce the prevalence of diseases like Tay-Sachs, Huntington's, HIV/AIDS, hypertrophic cardiomyopathy, and certain cancers.,,, The implications of such technology are significant considering the number of monogenic diseases.
Genetic diversity has always ensured that some individuals will be endowed with certain traits that give them a competitive advantage. So, why does the idea of selected genetic advantage tend to make us morally queasy? In essence, unequal access to the technology 'stacks the deck' and in doing so, leads to unfairness. Importantly, we argue, this moral queasiness should extend to the use of germline editing for disease prevention. On the outside, using germline editing for disease prevention sounds ethically justified on the grounds that it could reduce disease and suffering for individuals. Some in the medical field have asserted that germline editing for disease prevention is not necessarily unethical and has a place in medicine. Indeed, while the ethical line has been easily drawn against genetic enhancement, there has been less concern over trying to justify why using germline editing to treat and prevent disease is ethically problematic. To understand how this might be unjust, we must take a step back and consider a population-health perspective.
| Disease Prevention, Injustice, and the Embodiment of Inequality|| |
The inequality and unfairness of genetic advantage rests on two factors. The first is because the advantage is acquired at a rate higher than it would be by chance alone. With germline editing, no amount of individual effort will allow an individual to gain this advantage for themselves, thus eliminating equality of opportunity. The second factor is the capitalist nature of our society, which will likely result in its commercialization, consequently restricting access to only those who can afford it. As a consequence of the wealthy having greater access, it will disproportionately provide a competitive advantage to those who are already excessively advantaged.
Consider, for example, if we were to edit the CCR-5 gene. It is a rare occurrence, but some humans are born with a mutation in the CCR-5 gene that confers them immunity to HIV infection. If such a trait is modifiable, and it very well is with this new technology, then access to this genetic trait may, again, be disproportionately accessible to those who have the financial means. What was once an immunity of chance might now become an immunity of wealth. HIV/AIDS already disproportionately affects marginalized populations, and there are many classist stigmas associated with the disease. If immunity is a characteristic of the wealthy, then disease becomes a characteristic of the poor, and “any distinguishing characteristic, whether social or biological, can serve as a pretext for discrimination and thus a cause of suffering.”
From a population-health perspective, socioeconomic inequalities are among the greatest contributors to health inequity and disease in a population, with far more influence over the health of a population than genetics. As Rawls argues, inequalities should only be tolerated when they are of benefit to the general population, and in particular to those most disadvantaged. Commercialization of CRISPR for germline editing would thus be problematic because it would not benefit those who are most disadvantaged.
From an egalitarian perspective, Hausman argues that a health gradient is not wrong purely because it is unequal, but because of the inequalities in well-being and opportunities it causes. On the topic of justice, Hausman explains that most theorists believe that inequalities cannot be just or unjust if human actions do not cause, or cannot mitigate, the inequality. The prospect of germline modification for disease prevention could thus constitute an injustice, as it is the human action of commercializing this technology which would result in unequal access to the technology for those only with the socioeconomic means to afford it, or for those who live in developed income countries with the infrastructure to provide it, both of which would lead to an unequal distribution of health.
To be sure, genetic editing for disease prevention is unlikely to be a major source of inequality in the near future. However, the multigenerational nature of germline inheritance may eventually cause the effects of the inequalities to accumulate, especially if there is a competitive advantage for survival. Instead of serving humanity, germline editing for disease prevention may thus divide humankind by perpetuating and accelerating the systematically asymmetrical distribution of power in society. Indeed, the socioeconomically advantaged already have copious resources to give their children a competitive edge. The overall result will be amplification of power and resources in the advantaged group, and further loss of power in those who have little to begin with. Since health equity requires social inclusion and agency, and since this loss of power among disadvantaged groups will hinder their capacity to represent their needs and interests, then it follows that inequitable access to germline editing would negatively impact health equity.
| Disease Prevention and the Perpetuation of Stigma and Discrimination|| |
According to the political economy perspective, corporate, upper, and middle class remain in positions of influence in the medical discourse. These groups of people enjoy better access and privilege in the healthcare system than people belonging to the lower social classes. On the other hand, the lower classes, comprising the largest portion of people, who have less resources and opportunities to exert control over their circumstances, struggle to access health and other social resources. It makes them less empowered, less resistant to medical dominance. They are looked upon as the “minions” in terms of the power struggle in the medical system. Their positions as service seekers are looked upon in the light of moral values. They are the subject of constant critique by the privileged class. The 'principles of objectivity' and 'the ethical tenet of altruism' in the healthcare service delivery make health professionals imagine models of a good or bad service seeker based on the patients' social status, education, gender, race, sexual orientation and other identities. Service seekers fall into the category of the 'bad' if the service provider judges them as morally or socially irresponsible due to their poverty or any other factors related to their lower socioeconomic statuses. Such medical gaze creates stigma and discrimination.
In the case of accessing technologies such as CRISPR, there is a possibility of a brooding scenario of stigma and discrimination if we fail to ensure equitable access to the technology for all. If the technology is only affordable to the dominant groups, people with a lower socioeconomic status will be looked upon as the 'bad' service seekers. Low-income parents will be considered morally and socially corrupt if they give birth to unhealthy babies. These parents will be blamed for not making use of the gene editing technology during pregnancy. Poverty will be decontextualized, and it will be perceived as an individual problem—a lack of commitment to strive for a better life. Consider how people with diseases that are perceived to be the result of personal choices, like lung cancer from smoking, tend to receive less empathy than individuals who are born with a genetic disorder which is perceived to be the result of chance. Society tends to feel sorry for those who 'lose the genetic lottery' but tends to blame those who are perceived as causing, or not taking steps to prevent, their own illness. Therefore, having the option for germline editing could cause society to forcefully shift the onus for preventing illness on those parents who live in poverty and are unable to avail of the technology during pregnancy. As a result, with germline editing technologies, there is a chance of seeing systemic oppression and injustice in the healthcare system.
| A Human Rights Argument for Disease Prevention Aspects of CRISPR|| |
Rioux, using a courtroom metaphor, questions, “how many people must feel like they are in front of … judges every time they need healthcare or every time, they feel the influences of societies that do not provide justice in the context to the right to health?” She further says that judgements are made by those in power about which diseases need attention, who is seen as vulnerable, what determinants of health need attention, and which populations and individuals get the access, etc. It is unfortunate that the health of millions of human beings still suffer due to the political, social, and economic discrimination towards individuals as well as states.
It is also surprising that little attention has been given to the human rights lens of CRISPR application for disease prevention despite the obvious understanding that health is a fundamental right. While the scope of our discussion is limited to disease prevention, others who have taken a human rights approach often discuss disease prevention together with genetic enhancement or simply discuss germline editing in broad, generic terms.,, These authors touch on a myriad of subjects, including human dignity, eugenics, law, reproductive rights, cultural values, and the effects of the blurred line between disease prevention and enhancement on regulation and rights.,, According to Rioux, there are obvious inequalities evident in how healthcare, health status, drugs and drug therapies, biotechnologies, and other health promoting facilities are made available to people. The life expectancy comparison among and within the countries in itself reflect how someone born in a developed country and in higher socio-economic gradient is destined to live longer than someone born in a developing country. With this understanding, efforts are being made by the United Nations to reduce health disparities.
The right to “highest attainable standard of health” was first articulated in the World Health Conference in 1946 and offered as an approach towards more equitable healthcare systems. A right based approach to healthcare means to utilize the human rights framework for health development. By applying the principles of human rights into the design, implementation, and evaluation of policies, we can move towards a more equitable healthcare system. Further, in 2000, the committee on United Nations' International Covenant on Economic, Social, and Cultural Rights (ICESCR) established four criteria—Availability, Accessibility, Acceptability, and Quality—for evaluating right to health.
Access to any technology that can reduce human suffering and improve the quality of life is not only a social imperative but an issue of social justice. With an understanding that the human enhancement aspect of CRISPR would be beyond the scope of necessary healthcare services, the immediate issue for consideration is that of disease prevention aspects of CRISPR technology. For the purpose of this paper, we focus on the “equality for all” aspect of the human rights framework and discuss how this technology can be equitably distributed to reduce human suffering.
Efforts should be made to make CRISPR technology for disease prevention available to everyone in need in the developed as well as developing countries. Countries with universal, privatized, or quasi health care systems should all be able to benefit from this technology. At the same time, this technology should also be accessible. People should have access to information about the benefits of CRISPR technology and how it can potentially improve the health outcomes and prevent diseases. It should also be economically accessible so that people from lower socio-economic status do not face systemic discrimination. In context of the disease prevention aspect of CRISPR, it is argued that not only is it relatively quick fast and easy to use, but also significantly inexpensive as compared to other gene editing therapies. It costs as low as $30 as compared to cumbersome techniques utilizing ZFNs that can cost more than $5000. Hence, it has the potential to prevent dreadful diseases at a much lower cost than other technologies. That said, given that traditional in-vitro fertilization (IVF), even without preimplantation genetic testing, can costs tens of thousands of dollars, the costs of producing a pregnancy through a CRISPR-edited embryo or germline cell will likely be much higher. Furthermore, the health care coverage funding for IVF varies considerably across jurisdictions around the globe because of its privatization, resulting in unequal access for those who cannot afford to pay, so we see it as unlikely that CRISPR germline editing will be equally accessible if it too becomes privatized. Investing in disease preventive technologies may also yield economic benefits for the governments and policymakers as it may lower the cost of disease management. Efforts should also be made to evaluate if the technology is acceptable by people and communities, which means it is ethical, culturally sensitive, and preserves an individual's rights. Last but not the least, the quality of CRISPR technology should meet high scientific standards, be medically appropriate, and of good quality. To ensure the quality of this technology's application, practicing professionals should be highly trained.
It is worth considering these aspects before this technology becomes a norm in medical practice. By considering and applying the human rights approach, the key stakeholders can ensure, at least in terms of CRISPR technology, that the right to the “highest attainable health” is preserved by ensuring the right to equal treatment.
| Conclusion|| |
According to Farmer, “the commodification of medicine invariably punishes the vulnerable.” Whether applied for health enhancement or disease prevention, inequitable access to CRISPR gene editing technology could perpetuate social inequities and, ultimately, human suffering. In addition to the strong evidence for the causal relationship between socioeconomic disparity and health inequities,,, commercialization of genetic editing, even for disease prevention, could pose a risk to public health by further perpetuating socioeconomic inequities. We have argued and supported that genetic germline editing for disease prevention could give a competitive advantage to children. If these techniques are available only to those who can afford to pay, then such traits would become a hallmark of those who are already socioeconomically advantaged. This would constitute an injustice because it would lead to an amplification of the asymmetric power distribution in society and in doing so hinder equal opportunity for, and the agency of, marginalized populations. Given that unequal access to genetic editing threatens to accelerate and entrench socioeconomic inequities, we should be urging policymakers worldwide to consider moratoriums on the privatized commercialization of germline genetic editing for disease prevention purposes. Even though current moratoriums prevent clinical research in humans, pre-clinical research towards potential disease prevention applications has continued and there is a good possibility that clinical applications of CRISPR for disease prevention will be realized in the future. Hence, as a step towards the achieving the “highest attainable standard of health” for all, we suggest applying a right based approach to make the disease prevention and treatment aspects of CRISPR germline editing technology available and accessible for everyone.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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