During the eugenics movement, the concept of the perfect citizen began to take form as technology had given society the ability to prevent certain individuals from reproducing. As this idea took shape, the disability community was negatively impacted, since society held a belief similar to that of Peter Singer’s such that an individual with disability was not a “person” (Gabbard). While gene-editing technology continues to advance, issues raised during the eugenics movement have begun to resurface as we ask ourselves which conditions we should aim to eradicate.
CRISPR-Cas9 gene editing is one such technology that has the potential to help erase lethal diseases from the population, but also has the potential to erroneously attempt to eradicate forms of human diversity such as disabilities (Hayden). CRISPR-Cas9 technology allows physicians and scientists to alter DNA sequences in order to modify gene functions, which ultimately has the power to correct genetic defects (Hayden). Since CRISPR is a cost effective technology, it may soon be utilized by different classes in society (Benston). This factor will increase the prevalence of gene editing in the population. Thus, not only does CRISPR have the potential to prevent individuals in the population from developing certain life threatening diseases or unwanted traits, it also has the potential to pass down the altered genome to subsequent generations (Hayden). When considering which traits to eliminate, ethical issues are raised that can only be resolved by communication between the disability community, physicians, and society.
Communication between these various groups can allow society to gain a better understanding of what life is like when living with a certain disability or disease. For example, people living with Huntington’s disease, such as the members of the Sabine family, are actively advocating for an end to the neural and physical deterioration that is a hallmark of the disease (Hayden). Other proponents of gene editing are often the parents of children suffering from lethal diseases. One such parent, Matt Wilsey remarked that, “ As a parent with an incredibly sick child, what are we supposed to do- sit by on the sidelines while my child dies?” (Hayden). However, a difficulty with this argument lies within the question of what makes a life unbearable? The concept of an “ideal” life has already been put to the test by reproductive technologies such as pre-implantation genetic diagnosis as well as cochlear implants. Though these methods have already had an impact on the disability community, neither technology will have as significant an effect as CRISPR will have on this population due to its long lasting effects on future generations as a result of a single decision made by a child’s parents.
What type of responsibility does a parent have to their developing child? How does one draw a line withholding a parent’s right to make decisions for their child without disobeying the tenets of medical ethics? The basic tenets of medical ethics include autonomy, justice, beneficence, and non-maleficence (“What Are the Basic Principles of Medical Ethics?”). The issues posed by CRISPR on the disability community concern autonomy and non-maleficence. The former addresses the importance of letting the patient make decisions regarding their health care and the latter addresses the fact that procedures must be used in the hopes of benefitting the patient (“What Are the Basic Principles of Medical Ethics?”). However, the unborn child does not get a say in the decision rather the issue is left in the hands of their parent, which raises concerns regarding the child’s right to autonomy and non-maleficence. That being said, how can society eliminate parents’ decision regarding their child’s autonomy and non-maleficence when a child is not competent or capable enough to make the decision for itself?
As CRISPR becomes increasingly available to expecting parents, parents will inevitably be faced with this question. Not every parent will opt to edit their child’s genome, but if the majority of parents decide to remove “unwanted” traits related to disability from their child’s genome these traits will decrease in society and stigma towards individuals who decide to live with their disability will increase (Benston). However, some individuals are using current reproductive technologies to select for a child with disability therefore it is possible that parents may also use CRISPR to create disability in their child (Benston). Thus, should regulations focus on the extent of interference rather than the type of interference? Are these questions of gene editing or gene enhancement? This distinction is dependent on the definition of normalcy, which is often reflected in the fact that society often refers to disability as ableism rather than human diversity.
The potential of using CRISPR to create disability has potential impacts on the policy and legal rights of individuals with self-selected disability. For example, the American’s with Disability Act (ADA) protects the legal rights of individuals with different disabilities regardless of the cause of the disability (Benston). However, if an individual chooses to use gene-editing technology to generate disability that they perceive as non-disabling, should the ADA still protect them? What if in order to maintain diversity in the population it is incentivized to use gene-editing technology to generate disability? In the former case, it raises questions of whether protection by the ADA should be provided to these individuals and if so if there should be guidelines in place regarding what types of chosen disabilities should receive protection (Benston). In the latter case, it raises questions of whether it is ethical for parents to potentially harm a child by choosing a trait deemed undesirable by society in order to receive an incentive (Benston). Both of these cases highlight that it is important for policy makers to consult with individuals with disabilities in order to establish the different types of support required for disabled people to gain sufficient access in society.
Public perception of disability has already had an impact on policy and legislation. For example, the Supreme Court case Buck v. Bell ruled that it was acceptable to prevent “mentally defective” people from reproducing (Miller and Levine). Additional legislation also discriminates against members of the disability community by preventing disabled individuals from marrying or adopting children (Miller and Levine). However, positive legislation is also already in place. For example, a law in Washington states that the parents of a child with a developmental disability are not allowed to consent to the involuntary sterilization of their child due to the fact that the procedure breaches the child’s rights and privacy (Miller and Levine). This legislation is important to the current gene editing debate because it raises the issue of whether or not is it okay for legislation to control parents’ ability to make medical decisions concerning their child.
The question of what is unwanted human diversity is first raised when a parent is given information regarding the health of their unborn child. In these situations, the possibility of using reproductive technologies such as CRISPR is often framed in a way that reflects the views of the physician delivering the information (Miller and Levine). Thus, a physician’s idea of a disabled life can have long lasting social implications such that he or she may present information in a way that reflects their view. When a physician encourages parents to use CRISPR to eliminate disability in the developing fetus, there are long lasting social implications such that certain disabled communities may be edited out of existence.
As we ask ourselves these questions, we are reminded of the eugenics movement and its startling parallel to the current gene editing landscape. In addressing these similar events, it is alarming to note that the genetics policy arena does not include representatives from the disability community (Miller and Levine). This issue is intensified by the notion that health professionals often do not include disability in their definition of “health” (Miller and Levine). The repackaging of reproductive technology from forced sterilization to gene editing does not eliminate the underlying problem of issues regarding notions of disability.
Public perception of health often assumes that an individual’s quality of life is inversely proportional to the degree of physical or mental impairment experienced by the individual (Miller and Levine). Thus, when presenting information to expecting parents about their unborn child’s disability, their negative assumptions about disability may color the counseling they provide to the parents. This assumption is reinforced by the idea that new genetic technologies like CRISPR-Cas9 can act as a cure to disability (Miller and Levine). In addition, these views are supplemented by the widely upheld medical model of disability, which states that disability is a disease that requires treatment in order to assimilate these individuals into normalcy and mainstream society (Miller and Levine). Due to the separation of the disability community from mainstream society, individuals outside of the disability community often struggle to see how disabled individuals are able to live normal, fulfilling lives.
Work has shown that many disabled people are satisfied and happy with their lives. One such individual who suffers from cystic fibrosis said that given the chance to take advantage of gene editing technology to remove the cystic fibrosis gene from her genome she would opt to leave the gene in her bloodline (Hayden). She felt this way due to the fact that her individuality and personality were largely the result of living with this genetic disease (Hayden). In addition, a study found that when comparing lottery winners and recently disabled individuals, the lottery winners ranked their current happiness as higher (Hayden). However, both groups predicted the same levels of future happiness and the recently disabled group derived more pleasure from everyday activities (Hayden). This information can be used to inform and educate society about how disability is a positive form of diversity in the population.
Clearly, the use of CRISPR is laden with controversy. Part of the controversy lies in the categorization of CRISPR as a gene editing technology. The use of the word “edit” reinforces stigma against disability as the terminology implies that the disease or disability that we are attempting to eliminate with this technology is undesirable (Benjamin). In presenting medical technologies like CRISPR, not only are scientists editing out unwanted disabilities, but they are also suggesting that something that is not broken needs to be fixed (Miller and Levine). This all-or-nothing approach to therapy assumes that there is a one-size fits-all rule that can be used to describe the quality of a person’s life (Miller and Levine).
Until society comes up with a definitive definition of disability it will be challenging to establish the boundaries of gene editing technology. Various disabilities enrich society with diversity, but it has yet to be decided which if any disabilities lead to a life that is not worth living. As pivotal as this technology is, there may be consequences that appear several generations after the first CRISPR genome alterations are made (Benston). For example, Sickle Cell Disease, a disease that will be targeted by CRISPR, is beneficial for many individuals living in Africa because people who are heterozygous for the trait are resistant to Malaria (Hayden). This is just one example how one such disease does provide benefits for the affected individual, and it illustrates that CRISPR may remove some beneficial variation in the gene pool, which can potentially lead to catastrophic outcomes down the road.
Ironically, the first successful use of CRISPR Cas9 to edit a human embryo’s genome was announced on the twenty-seventh anniversary of the Americans with Disabilities Act (Cokley). Though unintended, this coincidence further illustrates how there is still stigma against disability. In the United States, one out of five individuals live with a disability (Cokley). It may seem that using gene-editing technology is an act of beneficence to reduce the prevalence of disability in the population, but a boundary between acceptable variation and disability needs to be drawn. Scientific progress cannot be used as a justification for injustice (Cokley). Though CRISPR technology is intended to reduce disease, if boundaries are not established, it will also be used as a means to generate normalcy resulting in injustice for the disability community (Miller and Levine). Thus, it is critical that the disability community is engaged in these conversations in order to show that disability should not be edited out of the population.
Benjamin, Ruha. “Interrogating Equity: A Disability Justice Approach to Genetic Engineering.” Issues in Science and Technology, 2016, issues.org/32-3/interrogating-equity-a-disability-justice-approach-to-genetic-engineering/.
Benston, Shawna. “CRISPR, a Crossroads in Genetic Intervention: Pitting the Right to Health against the Right to Disability.” Laws 5.1 (2016): 5. PMC. Web. 5 Mar. 2018.
Cokley, Rebecca. “Please Don't Edit Me Out.” The Washington Post, WP Company, 10 Aug. 2017, www.washingtonpost.com/opinions/if-we-start-editing-genes-people-like-me-might-not-exist/2017/08/10/e9adf206-7d27-11e7-a669-b400c5c7e1cc_story.html.
Gabbard, Chris. “A Life Beyond Reason.” The Chronicle of Higher Education, 7 Nov. 2010, www.chronicle.com/article/A-Life-Beyond-Reason/125242/.
Hayden, Erika Check. “Should You Edit Your Children's Genes?” Nature, 23 Feb. 2016, www.geneticsandsociety.org/article/should-you-edit-your-childrens-genes.
Miller, Paul Steven, and Rebecca Leah Levine. “Avoiding Genetic Genocide: Understanding Good Intentions and Eugenics in the Complex Dialogue between the Medical and Disability Communities.” Genetics in medicine : official journal of the American College of Medical Genetics 15.2 (2013): 95–102. PMC. Web. 5 Mar. 2018.
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