HUMAN GENE-EDITING REGULATION by Kemi Akenzua

HUMAN GENE-EDITING REGULATION By Kemi Akenzua

INTRODUCTION

“Eugene suffered under a different burden – the burden of perfection” says Vincent Freeman, main character in GATTACA. The film GATTACA, much like other dystopian films of the 1990s, is a cautionary film about burgeoning technology and the effects that said technology could have on society if left to develop without regulation. GATTACA proposed a depiction of society in which each person’s genome determined their rank and role in society. One’s genome was either determined by nature or by a geneticist before birth, depending on the parents. The film, and other media at the time, such as the 6th Day, sought to imagine the implications of the work of the Human Genome

Project, which had begun seven years prior. The project began Gattaca, a pop under President George H.W. Bush in 1990 as a publicly funded, culture sci-fi film international effort to sequence the entirety of the genome. The that explores what fanfare surrounding the project was immense as twenty medical the future of society institutions across six different countries worked in tandem, or in would look like in a competition, to finish the project as quickly and cheaply as possible. world dominated by As the project reached its goal, President Bill Clinton praised the gene-editing. modern science for showing that “all human beings, regardless of Source: ReelRunDown race, are more than 99.9 percent the same.” The genomic work showed the capacity to bring people together across differences; nearly 20 years later, there’s a growing fear that same work will do the exact opposite. In recent years, genomic work has developed to include genetic mutation technology such as CRISPR. Some believe a designer baby

HARVARD MODEL CONGRESS

culture, as depicted in GATTCA, is on the horizon. Others may believe such research could eradicate debilitating and expensive diseases. “…all human Regardless of predictions and fears, genomic technology beings, regardless continues to develop. The Human Genome Project, and other of race, are more projects that have catalyzed the growth of this industry, have been than 99.9 percent largely state funded by governments that are a part of the World the same.” Health Organization today. Policymakers must work together to President Clinton devise innovate approaches to this evolving issue that will affect all of our respective citizens.

Human Genome Project (HGP) – EXPLANATION OF THE ISSUE Was an international scientific effort to Historical Development map the human genome. Genetic mutation is defined as the alteration of the nucleotide sequence of the genome of an organism, virus, or extrachromosomal. The history of genetics leading up to the advent genetic mutation spans many centuries and encompasses the word of figures such as CRISPR – A genetic Aristotle, Charles Darwin, and Gregor Mendel. Those interested are engineering tool that encouraged to review this expanded history, but this synopsis will uses a CRISPR briefly cover the steps leading to the Human Genome Project. sequence of DNA and its associated protein History of Genetics to edit the base pairs In 1953, James Watson and Francis Crick determined the double of a gene helix structure of DNA. Their work, which pulled from that of Rosalind Franklin, proved what had only been speculation: that DNA is the molecule responsible for hereditary characteristics. Moreover, biologists and geneticists now knew where to direct their study of how genetic characteristics, from hereditary diseases to hair color, are carried between generations. Thereafter, the discovery of codons, or the three-letter nucleotides of DNA, by Nirenberg and others in the early 1960s helped biologists better understood the Genetic mutation – correspondence between naturally mutated genes and the amino Alteration of the acid sequence of proteins. nucleotide sequence of Three decades of scientific research later culminated in the full the genome of an mapping of the entirety of the human genome. Scientific fervor had organism, virus, or propelled research until this point, but mapping, and essentially extrachromosomal. owning, the human genome sequence marked a paradigm shift in genetics and government involvement in research. Between 1987 and 1990, ownership of the public effort in the United States to sequence the human genome bounced between the Department of Energy (DOE), the US National Research Council (NRC), and the National Institutes of Health (NIH), until an agreement was finally reached between DOE and NIH to collaborate rather than compete to support the HGP. The US was not the only country racing to complete the

genome sequence; Japan, China, South Korea, the United Kingdom, France, Germany, and others competed before agreeing to “release sequence data into public databases” rather than attempt proprietary ownership. This marked the start of the collaboration between what is often known as the ‘International Human Genome Sequencing Consortium.’ In 2000, the consortium announced drafts of the sequenced human genome to the public simultaneously to prevent a race or dominance. The HGP did not bring about the level of personalized healthcare around the world that many hoped but it did serve as a catalyst for efforts to map genetic difference, sequence cancerous genomes, and conduct genomic mutation. The latter has caused a dramatic shift from the near unanimous support surrounding HGP as lawmakers around the world grapple with this dicey issue. One of the landmark developments leading to this was the discovery of the nucleotide sequence that causes Huntington’s Disease. The lead researcher said, “we don’t stop here… [we] continue to unravel this mystery.” This fervor was amplified by the International Human Genome Sequencing Consortium and developments thereafter. Genetic editing of human embryos has simply been banned in many Broad Institute – countries and remained a largely dormant issue until now. Recently, Biomedical genomic mutation through CRISPR technology, developed at the research institute launc Broad Institute of Harvard and MIT, was used in China illegally to hed by a unique genetically implant HIV resistance at the embryonic stage of twin collaboration between babies. Dr. He Jiankui, a Chinese scientist, shocked the world the (including his own government) by announcing the birth of the two Massachusetts Institute genetically modified babies. His work would not have been possible of Technology, Harvard without that of the International Human Genome Sequencing University and its Consortium and the lack of effective regulation worldwide. Needless affiliated hospitals. to say, all nations have a responsibility and stake in the state and development of genetic mutation research Scope of the Problem Regardless of one’s support, or lack thereof, for genetic research and mutation, there are important issues to keep in mind as policy ideas are crafted. Threats of Genetic Discrimination A widely known concern surrounding the research and practice of genetic mutation is genetic discrimination which is the occurrence of inequity because of one’s genetic makeup and/or disorders. In the early 20th century, genetic discrimination gained significant traction in the United States, Mexico, Japan, Scandinavia, Brazil, and other countries. Interestingly, negative eugenics did not disseminate around the United Kingdom as much despite being the birthplace of Eugenics and its founder Francis Galton.

Eugenics was upheld as a theory to map criminal behavior, employability, and mental illness were accurately to gene pools. Eugenics based policy developed in, for example, Connecticut, U.S. as “feeble-minded” people were prohibited from marriage and in California through force sterilization of the mentally ill. When these cases were taken to court, they were not deemed violations of the U.S. Constitution, as exemplified in Buck v Bell (1927). Eugenics relied on physical traits, due to the lack of actual biological data, which

inevitably led to discrimination against immigrants, minorities, Eugenics poster in women, and the impoverished. In Germany, Eugenics began with the Nazi Germany, German Society of Racial Hygiene in 1905 and helped lead to the 1936. sterilization of over 400,000 people held captive. Sterilizations were forced primarily upon those of Jewish heritage, Roma populations, Source: Medium Afro-Germans, and those who exhibited any signs of mental illness. Today, there are multiple global policies to reflect a shift from Eugenics. In 1948, the Universal Declaration of Human Rights delineated the rights of disabled and mentally ill individuals including against forced sterilization. More legislation protecting against the influence of eugenics emerged from the Convention of the Rights of Person with Disability, the International Covenant on Civil and Political Rights, and more. Many countries also enacted state specifics policies. In the United States, for example, legislators introduced measures like the Equal Employment Opportunity Act (1972) and the Americans with Disability Act (1990). In Vitro The reverberations of such eugenics also had, and continue to Fertilization - A have, the capacity to impact healthcare, housing, education medical procedure opportunities, and more. The connections between eugenics and whereby an egg is genetic research are clear and policymakers must be aware of this as fertilized by sperm they craft policy to avoid past pitfalls and address the inevitable in a test tube or concerns of the public. elsewhere outside the body In Vitro Fertilization A common argument against genomic mutation research, as discussed in the introduction, is the possibility that parents may begin to select for traits unrelated to their children’s health and more for their potential for success. This outcry is not dissimilar from the reactions to the invention of in vitro fertilization (IVF), a process integral to genetic mutation. In the 1970s, in vitro fertilization had just been discovered as a process to harvest, fertilize, then implant human embryos. The process was banned in the United States and James Watson, prominent global biologist, said in a testimony: “all hell will break loose, politically and morally throughout the world.” The first IVF baby, Louise Brown, was disparaged as a ‘test tube baby.’ Three decades later, research into IVF has flourished to make the process more reliable and cheaper every year, millions of babies have been born through IVF and the founder, Robert Edwards, won

the Nobel Prize. The initial vitriol against IVF did not hold as Louise Brown served as a proof of success and demand for the service began. Policy related to genomic mutation, and even scientific research more generally, must keep the path of IVF in mind. Though the process was lambasted at the time, it became revolutionary technology and other countries lost traction in research opportunities due to the initial ban.

Direct-to- Direct-to-Consumer Genetic companies Consumer – In recent years, technology and health data have become Refers to promoting intertwined and there is no shortage of ways in which consumer, who a product or service can afford it, may now purchase insights about their health data. For straight from the example, $99 sent to a direct to consumer genetic testing seller to the company like 23andMe will buy analysis of one’s genome and consumer. insights, as 23andMe interprets them. In 2013, the United States’ Food and Drug Administration had to force 23andMe to cease marketing and use of their Personal Genome Service because it was a medical service that had avoided the proper regulatory review process mandated for all medical services. The information generated by 23andMe pulled from the work of HGP and their own 23andMe – A PGS, but “genetic-risk information needs to be reasonably solid.” The privately held next two years of retroactive regulation was taxing for both the FDA personal genomic and 23andMe, whose founder lamented: “[I] just accept… there's no and biotechnology Silicon-Valley, 24-hour, easy fix.” Perhaps a result of the obstacles company based in with the FDA, 23andMe was able to quickly comply with the California General Data Protection Regulation (GDPR) quickly in 2016 and created an entire page dedicated to compliance for any customers living under the new regulations. As genetic research, related or unrelated to mutation specifically, continues, policy must be prepared to adequately regulate direct-to- consumer medical companies before potentially inaccurate health information reaches citizens rather than after, as seen in the case of General Data 23andMe. Protection Regulation – a WHO Action regulation in EU law The World Health Organization’s view on human genetic editing on data protection has largely been a product of its member states in the past: a and privacy for all complete ban woven with a disregard for human genetic editing individual citizens of research lest it is legitimized. The shock of Dr. He’s work in 2018, the European Union however, caused WHO and its member states to take more actively (EU) and the address the development of human gene editing research. In 2019, European Economic WHO started its first committee on human genetic research with the Area (EEA). goal of making recommendations and synthesizing advisory guidelines for the usage and regulation of human genetic editing. The WHO’s Director-General, Dr. Tedros Adhanom Ghebreyesus, explained “gene editing holds incredible promise for health, but it also poses some risks, both ethically and medically.” The committee

met for the first time in March of 2019 and began drafting a slew of new initiatives including a central registry to track and evaluate all research in the realm of human genome editing. This is the most up “Some of us will to date work done by WHO in the realm of human genome editing continue to inherit and it is without much precedent. often life- Other Policy Action threatening diseases.” A near constant principle of cutting-edge science is simple: Alex Lee someone is always working on it; genetic research is no different. Regardless of policies set to ban, limit, or wholly support genetic research, research will continue under the purview of other governments or private institutions. As exhibited by the Food and Drug development of IVF, the United Kingdom pressed forward as the U.S. Administration lawmakers banned the practice and the UK continues to be a (FDA) – A forerunner in this field. The Nuffield Council on Bioethics, an government agency influential independent charity funded by the Wellcome Trust, has established in 1906 come to the conclusion that genetic mutation is “morally with the passage of permissible” if the child’s objective interests are the sole purpose and the Federal Food do not “add to the kinds of inequalities that already divide society.” and Drugs Act. Additionally, a report from the US Department of Agriculture titled “UK Government Paves Way for Genome Editing,” discusses the development of government supported research in the field as they prepare to leave the EU and its policies against human genome editing. The Francis Crick Institute in London, which is led by an American doctor, has received “permission from the UK Human Fertilization and Embryology Authority (HFEA) to use CRISPR-Cas9 in human embryos.” This narrative is not dissimilar to how IVF was introduced, and researchers and the UK are not alone. In Japan, the Prime Minister’s Cabinet Office announced in 2018 that it will craft explicit policy to allow and regulate gene editing in human embryos. This research cannot involve surgically implanting the embryos into a womb but does open the door to significant development in the field. Japan, like many countries, had little to no formal legislation on gene editing. This policy sought to resolve ambiguity while avoiding the hinderance of research. In Russia, a familiar crisis of science and religion is developing. Though the Russian Orthodox church is vehemently opposed to Molecular biologist human gene editing, researchers are still gaining ground in Denis Rebriko. conducting research and physically implementing it. Denis Rebrikov, Source: Nature a biologist based in Russia, hopes to obtain government approval and begin using genome editing technology on HIV-positive women before the end of next year. It is unclear if Rebrikov will receive government approval but, as seen in the case of Dr. He, some researchers may disregard government regulations in their pursuit. In the case of genetic mutation, the process has been carried out in China with alleged success. Meanwhile in the United Kingdom, research has led to the first mitochondrial replacement mutation, a

result of genetic research, in which an unhealthy nuclei and unhealthy mitochondria were swapped out and replaced with healthy. Neither of these processes are legal in the United States, and in many similar nations, but have occurred and will persist abroad. Moreover, citizens may go abroad to receive treatment or treatment may be offered in the US underground by illegal private organizations. Another avenue for research and legislation suggestions on human genome editing are government sponsored organizations like the National Academies of Sciences, Engineering, and Medicine. In 2015, the National Academies started its Human Gene-Editing Initiative which held an international conference co- hosted by the Royal Society (United Kingdom), Academy of Sciences (China), and representatives from a multitude of organizations. The National Second International Summit on Human Genome Editing was held Academies of in 2019 not long after He’s announcement of the genetically modified Sciences, twins. Organizations like the National Academies have sought Engineering, and heavily to create platforms for conversations of this tricky topic. Medicine – A Whether these conversations lead to actionable policy is yet to be collective scientific determined. national academy of the United States. IDEOLOGICAL VIEWPOINTS

Central Perspectives Most government and policymakers worldwide agree that genetic editing research is far too nascent to be performed on actual human genomes. As discussed previously, the work of Dr. He in China was met with outrage within China, around the world, and served as the catalyst for many of the regulatory developments developing right now. While stakeholders in this debate believe He’s work should be outlaw and met with proactive regulatory measures, there is little agreement or clarity on what exactly those measures are. As “[I]t’s a daunting Margaret Hamburg, co-chair of the new WHO panel, explained, “it’s task, but it’s the a daunting task, but it’s the beginning of a process and we don’t really beginning of a know all the strategies that might be used.” It is clear, however, that process and we human genome editing will not be allowed for physical don’t really know implementation soon in a majority of countries. The views of WHO and the new committee are echoed by the all the strategies National Acadcemics of Sciences, Engineering, and Medicine. The that might be organization began the International Summit on Human Genome used.” Editing in 2015 and held their second meeting just a few months after Margaret Hamburg He’s announcement of the genetically modified twins.

Emerging Perspectives As human genome editing has evolved, many of the perspectives surrounding the research have evolved with it. The notion that human editing research should be legal and supported is no longer baseless as many a few voices from differing spheres of influence have lent their voice in opposition to the blanket ban on human genome editing research. The co-chair of the WHO’s new committee on human gene editing dismissed the dismissal of gene editing research seen today, stating: “I don’t think a vague moratorium is the answer.” Amongst policymakers, a few have diverged from the official stance of their governments like U.S. Congresswoman Debbie Wasserman Schultz. In a congressional hearing, Schultz took one step further than her colleagues on the fence to openly oppose the U.S.’ ban and highlight the importance of the possibility to “cut of the passing of genetic mutations.” Lastly, some patients who suffer from debilitating diseases that would likely be remedied by human genome editing. Alex Lee, for example, is a writer for the United Kingdom based publication The Guardian and wrote “if we stop [research]... because of the assumption that we are heading towards a society of designer babies, all that will happen is that some of us will continue to inherit often life-threatening diseases.” Despite the near stalemate facing many countries and organizations wrestling with the development of gene editing, support for gene editing research and implementation is clearly growing amongst various groups.

AREAS OF DEBATE

Alleviate Ban on Genetic Testing The current ban on genetic testing research is an insurmountable roadblock at the moment for researchers worldwide who have spent months, if not years, studying genetic testing only to be forced to cease research once they reach the human testing stage. One possible solution would lessen the current stringent ban to allow for progress in research without actual implementation. This process would allow research to conduct testing on human embryos, not dissimilar from testing done to create in vitro fertilization, but would not allow researchers to implant said embryo into the womb. On the other NIH Lab in New hand, this ban alleviation may rapidly accelerate research and Mexico. increase the risk of a rogue researcher, as occurred in China. Based Source: Science on current policies, especially in the wake of Dr. He’s research, most Magazine countries would be against this policy at first. Whether specific countries could be convinced is yet to be determined.

Bolster Rights to Genetic Data Collection and Privacy Regardless of the legislation related to genetic testing and research, the effect genes have on the lives of citizens will only increase as the technology inevitably advances. At the moment, global and, especially, country-specific legislation fails to sufficiently protect all citizens against possible genetic discrimination. Laws relating to the usage of genetic, and related, information by third- parties should be as stringent as laws regulating research. Proponents of such policy would support the effort to protect genetic rights in an increasingly complex field that is not understood by most citizens. Opponents may argue such policy would hinder innovation as corporations have less freedom to utilize genetic information. 23andMe’s $99 Kit. Source: 23andMe International Genetics Effort International collaboration has been the cornerstone of many scientific advancements over the last century. To prevent the loss of traction in genetic testing and research whilst also upholding countries’ current legislation, scientists could partner with current countries exploring such research (namely the United Kingdom) so that countries have greater awareness of the trajectory of burgeoning genetic testing that cannot be done within their borders. Supporters of such action would view this as a way to avoid repetition of the

mistakes made relating to IVF research and development. Biometric Opponents would likely dismiss the urgency of participating in technology on a genome research. This is, of course, dependent upon the approval smartphone. from international bodies and would mimic the multinational Source: M2Sys Wellcome Trust and the international genomic sequencing effort. Direct-To-Customer Healthcare Regulations As genetic testing becomes faster and more profitable for companies like 23andMe, government bodies must be prepared to reel in DTC medical companies to ensure consumers’ rights are being Wellcome Trust – protected. This would entail setting guidelines for organizations, like Biomedical research the United States’ Federal Drug Administration, to construct charity based in the proactive, rather reactive, plans on approaching and working with United Kingdom new health tech companies. Additionally, this may involve expanding established in 1936. what qualifies as a health technology company as this varies greatly worldwide. Support and opposition to such action would not directly correlate with sentiments on genetic editing. Remove the Ban Entirely A major concern and possible result of the current stringent rules against genetic mutation research and testing are that such will just occur in the dark, unfettered by regulations. Instead, lawmakers could allow genetic testing and simply regulate it. Supporters would

appreciate the foresight of lawmakers to deal with the increasing prevalence of genetic testing rather than the blanket ban. Opponents’ comments would likely resemble those of James Watson during the IVF hearing: “all hell will break loose, politically and morally, all over the world.” Nearly all member states would likely oppose such action.

BUDGETARY CONSIDERATIONS

The World Health Organization’s funding is not dissimilar from analogous bodies within the United Nations. Most of its funding from member-states both through mandatory contributions and voluntary contributions over the minimum set. The rest comes from a combination of other United Nations bodies, charitable foundations, nongovernmental organizations, and from private contributors. The World Health Organization budget is $4 billion dollars and is broken down between communicable diseases, noncommunicable diseases, promotion of health, health systems, health emergency programmes, corporate services, etc.

CONCLUSION

Genetic testing is a difficult topic that has taken many forms over the last few decades. From vigorous support at the start of the Human Genome Project, to a string of regulations, regulatory bodies have a lot of history and responsibility to grapple with when dealing with genetic testing. Though genetic research is considerably stunted many countries, testing and advancements are still taking place in public and private corporations. Much of the fear and concerns related to genetic testing

surround what could negatively happen but there is plenty of development already in the genetic testing space that warrant a second look at each way the most countries are currently handling genetic testing and its implications. The risks have the capacity to shape every fabric of our respective societies from healthcare, employment, housing, consumerism, and daily interactions. Policymakers must be prepared for what lies ahead. WHO Offices in Geneva, Switzerland. GUIDE TO FURTHER RESEARCH Source: Glasscdoor As delegates prepare for committee, ensure you have an adequate grasp of the varying stakeholders in the history and future of genetic testing. This includes, but is certainly not limited to, the government websites, public research organization, private companies, international bodies, and citizens. Additionally, delegates should

strive to find similarities between the current conversations surrounding genetic testing and conversations that have occurred on other topics. As discussed in this briefing, the conversations surrounding IVF were very similar to the handling of genetic testing today. To learn more about the Human Genome Project and its implications, visit the National Human Genome Research Institute and the National Center for Biotechnology Information online. For information on country specific legislation, go to the appropriate sites such Congress.gov (U.S. Congress) or Inc.in (Indian National Congress). For general information on the topics covered, the following publications are quite thorough: MIT Technology Review, Nature, The Guardian, and Scientific American.

GLOSSARY

23andMe – A privately held personal genomic and biotechnology company based in California.

Broad Institute – Biomedical research institute launched by a unique collaboration between the Massachusetts Institute of Technology, Harvard University and its affiliated hospitals.

CRISPR – A genetic engineering tool that uses a CRISPR sequence of DNA and its associated protein to edit the base pairs of a gene.

Direct-to-consumer – Refers to promoting a product or service straight from the seller to the consumer.

Food and Drug Administration (FDA) – A government agency established in 1906 with the passage of the Federal Food and Drugs Act.

General Data Protection Regulation – A regulation in EU law on data protection and privacy for all individuals’ citizens of the European Union (EU) and the European Economic Area (EEA).

Genetic mutation – Alteration of the nucleotide sequence of the genome of an organism, virus, or extrachromosomal.

Human Genome Project (HGP) – Was an international scientific effort to map the human genome.

In vitro fertilization – A medical procedure whereby an egg is fertilized by sperm in a test tube or elsewhere outside the body.

National Academies of Sciences, Engineering, and Medicine – A collective scientific national academy of the United States.

Wellcome Trust – Biomedical research charity based in the United Kingdom established in 1936.

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