Crispr the next step for humanity

CRISPR: the next step for Humanity?

Peter Seylar UNIVERSITY OF DENVER

TABLE OF CONTENTS ABOUT THE AUTHOR ………………………………………………………………………... 2 INTRODUCTION ……………………………………………………………………………… 3 LITERATURE REVIEW ………………………………………………………………………... 5 METHODOLOGY ……………………………………………………………………………… 7 RESULTS AND ANALYSIS ……………………………………………………………………. 9 FOR FUTURE RESEARCH …………………………………………………………………… 14 CONCLUSION ………………………………………………………………………………… 15 BIBLIOGRAPHY………………………………………………………………………………. 16

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About the Author

Peter Seylar is from Minnetonka, Minnesota. He is currently enrolled at the University of Denver where he is studying Business Real Estate.

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Introduction Over the course of the last four million years the “human” genome has evolved a great deal.

We have changed minutely in almost every way from small changes to how we walk and talk to much larger changes like how we think and interact. Of the many questions facing our society today perhaps the ethical and moral implications of CRISPR stands as the most divisive. We have advanced a great deal from our humble beginnings but all this time we have lacked a certain element of control over our futures. Today however, new technologies like CAS-9 and CRISPR are emerging and with them we finally have a real chance to take our evolution into our own hands. With this research, my hope is to gather and dissect the opinions of the generation of individuals next in line to have kids by asking them the simple question “As humans do we have an obligation to use gene editing Technologies like CRISPR to remove disabilities and other chronic conditions from the human genome?”.

CRISPR is a relatively new technology with huge medical and ethical possibilities. It is a naturally occurring system that scientists have modified in order to reengineer the very sequence of our DNA. With Technology like CRISPR scientists have already been able to perform a number of miracle tasks but it is clear this is only the beginning. To this date, Scientists have used CRISPR to “remove malaria from mosquitos, eliminate a patient’s cancer, treat muscular dystrophy, make pig organs viable in humans, treat HIV, make super plants, and even cure blindness in humans…”

(Bennet Paragraph 4). From this list alone it is clear that CRISPR has the potential to revolutionize the face of human medicine and the only question is now how do people feel about essentially playing God. My choosing of chronic illnesses and conditions as my target for this study can be explained by the general attitude of pity many individuals have for conditions like asthma, arthritis, and other cancers and diseases. My hope is that by choosing a topic that the majority of the population felt 3

similarly about I would be able to possibly gage the reactions to CRISPR and CAS-9 in the best scenario possible where the only thing added or removed would be seen as something extraneous to begin with.

Through my initial research and literary review of the CRISPR and CAS-9 systems my main goal will be to identify what trends already exist within the research present in the field of gene editing today. From these consistencies will then proceed to develop questions which I will release to my respondent group in order to begin to gage awareness and responsiveness to the idea of gene therapy and alteration. From this point I will attempt to gage if the public is open to altering the human genome to possibly remove the presence of chronic diseases and illnesses. It is my hope that this research can exist as a stepping stone for many studies to come and serve as a standard for basic questions concerning gene therapy ethics.

Today, research is being conducted that has the power to completely alter the course of human development and it is within the best interests of all parties involved that mistakes are avoided at all costs. This being said, I think we are being gifted with a massively effective tool that needs to be studied and not simply set aside for fear of failure. Society can only progress with advances in medicine and it is within this research that I hope that I can provide insights on what aspects of our genes we are comfortable with altering for the betterment of humanity. My hope is that by conducting this research I can possibly provide legislators with a body of work that they can use to judge public opinion and possibly create laws regarding where and when CRISPR can and should be used. This type of public opinion research is essential in good legislation and if we are dealing with a topic of this magnitude good legislation is the only legislation that is acceptable.

Soon we will have the ability to forever change what we consider as human and even possibly design our perfect selves. From the range of questions that could be asked of the limits of humanity alone I will seek to present a fair and balanced argument providing ample arguments for 4

each side of the fence diving the use of CRISPR and hopefully gain some insight on what humanities desired ending will be. “Science and technology not only improve lives but shape our expectations, and eventually our experiences, of how lives ought to be lived.” (Jasanoff Para. 7)

Literature Review Initial Analysis The ability of mankind to influence the results of procreation has been well documented however, we are reaching a critical mass to some degree where changes have started concerning elements of the genome such as gender and disease resistance. In “CRISPR Lit the Fire: Ethics Must Drive Regulation of Germline Engineering”, we begin to delve into the ethics and legality of making changes to the eggs, sperm, and embryos, however the big question that really needs to be asked still exists in the form of rights of future individuals and their infringement. The truth of the matter is that as adults we make decisions all the time that could affect the future of our children and even ourselves. With this self-evident truth already well understood isn’t it time that we are able to make a decision that can actually positively influence the future of our families and our race? It is true that by the laws of genealogy only certain outcomes are possible within the traits of a child; however, should we really only be able to be defined by the traits and mistakes of our past?

When a gene change can provide a moral and certain benefit is it not our responsibility as parents to implement that change and in a sense, expand on the freedom of our child and our conscious in terms of the burden of worry we will no longer carry due to the fear of chronic illness?

The answer to this question and many others will be sought through the research conducted in this study and if conclusive the results could provide reason to eradicate chronic disease from the face of humanity and indeed change the structure of what it means to be human.

Source Trends 5

In my research, one consistency that I saw throughout all of my work with CRISPR and the CAS-9 was a general fear for the power of the system. Perhaps it is best embodied in this quote by Raheleh Heidari, “Biosecurity concerns, deontological issues and human right aspects of genome editing have been the subject of in-depth debate; however, a lack of transparent regulatory guidelines, outdated governance codes, inefficient time-consuming clinical trial pathways and frequent misunderstanding of the scientific potential of cutting-edge technologies have created substantial obstacles to translational research in this area.” (Heidari, Shaw, Elger Para. 1). Raheleh Heidari is currently a prominent member of the CRISPR analytical community and has often been one of the individuals responsible for highlighting the need for ethical considerations within the CRISPR research community. This sense of general uncertainty is also reflected in an article by Lijing Jiang and Hallam Stevens, “Scientific and media coverage in the United States portrayed the Chinese group… as renegades who ignored established international ethical norms. Many scientists condemned the steps taken by the Chinese group, citing the dangers and ethical pitfalls of such work.” The general consensus behind CRISPR is that it is not a technology to be trifled with. With this tool, we have the power to essentially change the face of humanity and that is not a power that should be handled lightly. From my conclusive analysis of my many sources I have found a singular truth, change is coming and the time for indecisiveness is fading fast. Collectively science is in desperate need for comprehensive research regarding the rights parents and their duties to their children both born and unborn and with the range of problems the world faces today we need to come to decisions quickly and what changes can be made in order to avoid disaster.

Research Niche and Purpose “I can't tell you what an "ethicist" would do. There are a lot of ethicists and they have lots of different approaches, and I think that is one of the good things about the field. You can try to figure 6

out whose approaches you like and respect and whose you don't. You should pay some attention to all of them.” (Gitschier Para. 4). It is clear that work done thus far concerning CRISPR has been handled tentatively as all work regarding the fate of a species should be, however I believe that we are missing a vital piece of information that's relevance will be extremely important in the fate of the generations of the immediate and distant future. Where should the line be drawn for the generations that will soon be parents of CRISPR viable children. It has already been established that the work involving CRISPR will, “be of fundamental scientific value regardless of whether therapeutic applications will be realized or not” (Para. 5, Jiang, Lijing, Stevens, Hallam) and with that distinction alone we must appreciate that there will be deep divisions throughout our society with the sole mention of scientists “playing god” for our future children. As our society becomes more and more polarized with a literal end to the middle ground of the political spectrum who should get to decide if scientific progress is a viable solution to humanity's diseases and disorders. This is the question that my research will seek to uncover. This generation sits at the precipice of a decision that cannot be undone. Whether we choose to make changes or not the prior knowledge of the perception of the next generation of child producing parents will provide massive value for future decision makers and legislatures around the world.

Methodology Outline With the main goal of my research to find the basic opinions of a large number of individuals I was left with an interesting dilemma when trying to decide what method of research I was going to take. Due to the tedious and inefficient nature of randomly sampling and selecting members of the population in attempt to find a range of opinions concerning the use of CRISPR and CAS-9 I chose to use the survey method of response instead as it gave me access to a much 7

larger number of respondents in a timely and fashionable manner without the high probability of response bias. It is true that meaningful results could have been gained from conducting a number of in depth interviews however one of the main goals I have maintained throughout my research is the desire to find the opinions of a large number of individuals in the upcoming group of childbearing parents and this method of data collection brought me closer to that goal.

To begin my survey, I decided to include a section of demographic questions including age, gender and other basic ideas including religious affiliation that are all viewable in Figures 1 through 4 of my analysis section. However, beyond these basic demographics I also wanted to know if individuals had any contact with chronic disease and illness and from this I wanted to know if that connection could in turn affect their answers to the survey questions posed concerning the ability to remove these conditions. My whole goal was to see what factors made people more open to the use of CRISPR and CAS-9 and my hope is that maybe if it is found that people universally despise these conditions that decisions will be more easily made in concern with the removal of the source of these conditions, chronic disease, and illness.

For the subsequent section of my survey I wanted to focus more on my initial question of, “As humans do we have an obligation to use gene editing Technologies like CRISPR to remove disabilities and other chronic conditions from the human genome?�. To do this I supplied my respondents with a range of questions both to judge their familiarity with the CRISPR technology and to develop a feeling for their willingness to utilize something like CRISPR on a loved one or child. It was my hope that from seeing CRISPR’s potential usefulness people will come to their own conclusions about whether it has a place within our society or not.

Overall, my research goal is to gain an understanding for the opinions of the general population of pre-childbearing aged individuals by applying basic questions concerning the viability of gene editing tools like CRISPR to their collective conscious. My biggest question still pertains to 8

public's perception of how CRISPR should be used in the future or if it should be used at all. In this day and age if we are to proceed with any type of responsible treatment we need to know where and when CRISPR is acceptable and everyone member of society must be involved in that question as it will change the face of humanity.

Results and Analysis Section Initial Overview The immediate goal of my research was to discern how college aged individuals in other words the upcoming generation of family aged individuals felt about the concept of gene therapy for the basic purpose of the removal of chronic diseases and illnesses from the human genome. To do this I arranged a variety of different questions concerning everything from demographic information to specifics about healthcare costs and even situational questions. From the responses, I received I learned a great deal about people's perceptions, openness, and moral qualms with CRISPR and I think the conclusions I reached can be used as evidence in public policy in the near future.

Demographics For my results, it was in the demographic information that all of my trends began. I found that of my respondent pool 85.71% of my participants fell within the seventeen to twenty-two-year-old range which existed within the target age group that I set at the commencement of my project. The rest of my respondents were members of older generations however this group only made up 14.28% of my response group. My respondents were about equal in terms of gender with 55.56% of

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my respondents identifying as male and 44.44% identifying as female.

Figure 1

Figure 2

One of the biggest flaws I found within my responses came from the question of ethnicity.

Over 85% of my respondent pool identified as Caucasian with the remainder of respondents identifying as Hispanic, Latino, and Asian. I think this inconsistency may come from the fact that my respondent pool all originated from my own contacts which mostly live in the majority Caucasian Midwest region.

Figure 3

One aspect that I was watching for most intently was to see if membership or religious affiliations affected the openness of individuals to CRISPR or CAS-9 however this pool of individuals was instantly limited since the majority of my respondents identified as either Atheist or 10

referred to the no preference section. Of the remaining 38.46% of respondents I decided to look for differences between the two different and distinct populations.

Figure 4

Finally, I asked my respondent pool if they had anyone in their direct family that had been affected by a chronic disease or illness. My goal from this question was to find whether or not the existence of chronic illness within a family affected responses as I thought the opinion of the individuals that had chronic illnesses would have a strong opinion the questions themselves.

CRISPR Content Details Interestingly of my respondent pool only 22.22% of my participants knew what CAS-9 or CRISPR were which didn’t really present a problem to my data collection but I thought served as a good precursor in describing how little people know about gene therapy technologies.

For my next question, I asked my respondents how they felt about the role of chronic illness within society. Overall, I was expecting responses to be based off of the presence of prior chronic illness within a family however to my surprise there was a higher correlation coefficient between the people that answered in the affirmative to the religious affiliation question. Basically, my findings suggested that people who consider themselves to be religiously affiliated have a higher chance of believing that chronic illness has a role within our society. Surprisingly, the number of respondents

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who answered “yes” to this question was higher than my initial estimates with 64% of respondents saying they believed that chronic disease does play a role within our society.

Figure 5

I decided that to single handedly look at just aspects of public opinion without taking in the wider picture of health care would be somewhat irresponsible as often times when people make optional medical decisions finance plays a huge role in whether they decide to proceed or not. I also felt that by bringing up the reduction of future healthcare expenses it might present CRISPR to many people that wrote it off for political or moral reasons before. I decided to frame the question in terms of the child's wellbeing as the goal of this research after all is to discern what decisions parents would make for their children not necessarily themselves. Surprisingly this question provided me with greatest number of “yes” responses out of my entire question pool. The 81.48% affirmative response rate suggests that possibly the best route to advocate for the use of CRISPR in the future would be through the financial sensibilities it comes and the future reductions in healthcare spending it might provide.

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Figure 6

For my final question, I asked participants the question that began my quandaries into this subject initially. “Do we have an obligation as humans and parents to edit out chronic illnesses and diseases from the general population’s gene pool?�. I wanted to know, do people think that we should take control of our evolution and remove extraneous and even harmful genes from our gene pool. In the end, it came down to two thirds split, with 66.66% of my respondents supporting the idea of removing chronic illness from the general population and 33% not supporting it. This answer may seem decisive however to me as a researcher I think we are still far from the real answer.

With the possibility and probability of response bias I think that the split is probably closer to fiftyfifty. However, from the stance of a lawmaker or lobbyist this percentage difference could definitely be used as evidence for enough public support to create legislation that would legalize the use of CRISPR on human subjects across the US. One interesting of this question that I did not expect was the almost universal acceptance of the idea from the older generations. With a correlation coefficient, very close to 1.00 almost all of the individuals from the older generations that answered my survey said that it was our responsibility as parents and members of the human race to edit out chronic diseases and illnesses from the general population. This could be from a certain gained perspective that comes with age however it also represents a certain division within the younger generations of individuals which really represents the individuals that I have been really targeting from the beginning.

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For me if anything is to be taken away from my findings it is that we should proceed with research and human testing of CRISPR but with extreme caution. I definitely saw a desire for this in many of the sources I used in my Literature Review but now I really responsible for any future progress that this study may lead and for that reason if nothing else I ask that we proceed carefully.

If we are to make a decision about if CRISPR should be used, we should make it universally taking into account the opinions of both the younger parents and the old in pursuit of a more efficient and equal human race. It is true that there were a few consistencies between generations however the R² value I received was far below the necessary threshold of a meaningful relationship. Although racial barriers still exist in our society I think CRISPR gives us a chance of finally becoming physically equal at birth and at the end of the day I believe that if proper safety precautions are observed CRISPR can be a tool of progress and good for humanity as a whole.

Limitations In the future, I would prefer a more diversified respondent group, not in terms of age but more in terms of ethnic, racial, and religious backgrounds. I think the fact that the majority of my respondents all shared many of the same characteristics may have led to my research not really representing the population as a whole and probably resulted in a certain degree of response bias.

For Future Research Some things that I would like to keep consistent in future research samples would be the way I asked my questions. I purposely didn’t leave room for a response that allowed participants to keep from choosing a side as I felt that with a topic like this I would only get meaningful results if my respondents forced to present an opinion. By leaving the respondent pool with a range of responses from “Strongly Agree” to “Strongly Disagree” people could probably rest in the middle and thus refrain from giving me meaningful results. I think we do have a long way to go but if the 14

necessary precautions are made I know that research can provide us with the meaningful results necessary to the implementation of CRISPR. Conclusion Throughout my responses there were a range of consistencies I found. Luckily the majority of my data came from the group of individuals in the 18-22 age group who fit within my distinction of the group of individuals who were the target of my original question on what future childbearing adults thinks about CRISPR and CAS-9. For the most part the slight majority of my respondent pool didn’t identify with any religious affiliation however for those who did they all fell under some Christian Denomination which in hindsight may have added some aspect of responses bias into my data since these individuals were also less likely to advocate for CRISPR. However, for the survey questions that offered the most potential impact in regard to future legislation there is reasonably strong evidence suggesting the general public would support the implementation of CRISPR. I still believe that more research is necessary but based off of the trends that I have gathered I think it won’t be too long before the first CRISPR babies are being born and humanity is taking its first steps into a future free of chronic illness and disease.

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Bibliography: Parent, Brendan. "CRISPR Lit the Fire: Ethics must Drive Regualtion of Germline Engineering."

Scitech Lawyer, vol. 13, no. 1, 2016, pp. 18-21, ProQuest Central, http://du.idm.oclc.org/login?url=http://search.proquest.com/docview/1868136403?accountid=14 608.

Jiang, Lijing, and Hallam Stevens. "Chinese Biotech Versus International Ethics? Accounting for the China-America CRISPR Ethical Divide." BioSocieties, vol. 10, no. 4, 2015, pp. 483-488, ProQuest Central; SciTech Premium Collection; Social Science Premium Collection, http://du.idm.oclc.org/login?url=http://search.proquest.com/docview/1733734871?accountid=14 608, doi:http://dx.doi.org/10.1057/biosoc.2015.34.

Heidari, R., Shaw, D.M. & Elger, B.S. Sci Eng Ethics (2017) 23: 351. doi:10.1007/s11948-016-9768z Gitschier, J. (2014). The ethics of our inquiry: An interview with hank greely. PLoS Genetics, 10(11) doi:http://dx.doi.org/10.1371/journal.pgen.1004780 Travis, John. "Germline Editing Dominates DNA Summit." Science. American Association for the Advancement of Science, 11 Dec. 2015. Web. 21 Apr. 2017.

Jasanoff, S., Hurlbut, J. B., & Saha, K. (2015). CRISPR democracy: Gene editing and the need for inclusive deliberation. Issues in Science and Technology, 32(1), 37-49. Retrieved from http://du.idm.oclc.org/login?url=http://search.proquest.com.du.idm.oclc.org/docview/177476386 3?accountid=14608 Chun-xiao, L., & Hai-li, Q. (2015). A double-edged sword: CRISPR-Cas9 is emerging as a revolutionary technique for genome editing. Military Medical Research, 2 Retrieved from http://du.idm.oclc.org/login?url=http://search.proquest.com.du.idm.oclc.org/docview/1772212 530?accountid=14608 Luo, X., Li, M., & Su, B. (2016). Application of the genome editing tool CRISPR/Cas9 in nonhuman primates. Zoological Research, 37(4), 214-219. doi:http://dx.doi.org.du.idm.oclc.org/10.13918/j.issn.2095-8137.2016.4.214

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