HUMAN GENETIC ENHANCEMENTS

Human Genetic Enhancements: History, Legislation, and Ethics. Tommy Vandoros The Academy for the Arts, Science, and Technology

Introduction Genetic enhancements are the new technological advancements and are on the threshold of becoming the new method of assisting people with their medical troubles. However, with new technological advancements comes new responsibility. The same products that can regenerate muscle tissue and prevent diseases can also establish a new form of eugenics in which enhanced individuals are genetically superior to those that are not. This has the capability to affect a wide range of things, from the prevention of death to the skill level of an athlete. Unfortunately, this technology is already highly restricted, due to a lack of understanding of the way it is meant to be used and regulated, in the United States. This lack of understanding causes ethical barriers to be placed by the public, who, through their own research, also read about the theoretical problems that society may one day face as a result of genetic enhancements. Without proper promotion and funding, the public will never gain an accurate understanding of what the intended purpose of what genetic engineering technology actually is. The appropriate action would be for the government to create concrete guidelines, or legislation, which can be followed by those that wish to open the use of genetic enhancements to the public as a therapeutic method for medical issues; as well as promote the use of this technology through advertisements and official informational websites specifically for the subject. History and Research of Genetics and Genetic Enhancements It started with James Watson and Francis Crick, who discovered and described the double helix structure of deoxyribonucleic acid (DNA) or the chemical compound that contains the genetic instructions for building, running and maintaining living organisms (NIH. 2013. Para 2.). In other words, they were the people that started the research of genetics by discovering

DNA. Almost twenty years later, a method was created to determine the DNA sequence that would later be the main focus of the Human Genome Project. The Human Genome Project is a research program that is centered on mapping and understanding all of the genes within humans. The starting point for this project was a close look at DNA, which holds all of our genes. DNA is primarily made of four bases and the genes are made of small variations to these bases. This research revealed that humans have approximately 20,500 different genes. Without the research, there would not be any sort of understanding of human genetics that are being manipulated today for genetic enhancements. Scientists are using what they have learned from the Human Genome Project to find which sequences create diseases and how drugs can affect the sequencing process (Human Genome Project Information Archive. 2013.). Another large part of history for genetic engineering was the cloning of Dolly, the sheep. This was happening while the scientists of the Human Genome Project were researching and finding valuable information on cloning. Cloning was first a big ordeal when Dolly the sheep was cloned because it had been unheard of. No one expected such a thing and everyone thought it was a miracle to have been done. However, the problem with the clone is that it was aging at the same rate as she would have normally been. So, for instance, if Dolly was seven when she was cloned, then her clone would start its life from seven years of age and die when the original Dolly would die (Rosen. 2013.). This happens because the telomeres in genes have a certain length at the beginning of life and decrease in size throughout that life. Later on, a group of scientists tried to clone cattle with a different method that involved creating and destroying and embryo, which is illegal in many countries, but it resulted in cattle that have the potential to live nearly twice as long as the original cattle. Now there is testing to attempt this in humans for the next magnanimous scientific advancement. At the moment, the goal is to clone human cells and

make them into embryonic stem cells from the patient, so that the patient can obtain cloned tissue from their own genes. Many people have used multiple methods in attempting this, and the best attempt has been from a group known as Mitalipovs group who used their own method involving caffeine and only two egg cells (Vogel.2000.). This shows just some of the research there has been in genetic engineering and how much scientists have done to discover what is known today. Funding All of this research has come with a very large price tag and has to be funded from somewhere. The majority of the funding for this research comes from the National Institute of Health and the Food and Drug Agency. In total, the Human Genome Project received around $437 million in its fifteen years of research, which seems like a lot, but not compared to what that kind of research would cost today (Human Genome Project Information Archive. 2013.). What Genetic Enhancements are to us and Future Plans Genetic enhancements involve the manipulation of gene cells to enhance or remove certain traits. The best example of this is actually in our food supply. A large use, that can be seen, is in crops (Jones. 1999.). Scientists can create crops that are resistant to certain pests; there is already production of larger fruits and vegetables as well. What many people dont understand is that these foods are already on the shelves of supermarkets and are in the food of restaurants. Not only can scientists make food bigger, they can also make it last longer and with certain foods so that they can produce larger quantities. Since larger quantities can be produced, these crops can also be sold at cheaper prices. The area of concern for genetically modified foods is in the safety. When a new food is being modified, it must be tested because

in the modification the nutrients in the food could double or triple the serving of that nutrient or it could develop another chemical that is unsafe for humans. The reason this is not a problem for the public is because these foods are tested, even within the European Union, in which genetically modified foods are now regulated on a union-wide basis (Jones, 1999, p. 3). This will prevent any genetically modified foods with problems from getting to the public and causing serious issues. Genetically modified foods are going to grow in our markets and help our economy. These foods are proof that scientists can modify DNA and use it to make things better. In foods, scientists can make them bigger, pack them with more nutrients, and get them to last longer. The research used to make this possible is also what scientists will use to prevent diseases and treat them in humans. As of right now, genetic testing is very common and not very hard to do. This testing can be used to see what traits and diseases an unborn child will possess in its life. It can also be useful for living persons to see if they are a carrier of certain diseases that could be passed on to any offspring. If a baby is conceived by in-vitro fertilization, the embryo can be tested before it is developed to see what traits the child will possess before the pregnancy can take its course. This testing has also been helpful for doctors to treat diseases before the symptoms occur which can help prevent any major problems later in that persons life. This already exists and should be considered by any couple that wishes to have a child. This is the basics of genetic engineering, which is identifying the problem. If the problem can be identified, then it is possible to find a way to fix it before it can take effect and actually cause damage on a person. From this basic technology, scientists can learn exactly how to find certain diseases and experiment to get rid of them completely. The best way to think of this is updating a phone or computer to fix

minor bugs and issues, but the phone is a person and the bugs and issues are the diseases, like cancer, Alzheimers, and de mentia. Genetic testing and screening is necessary for the growth of genetic enhancements, which can eliminate the diseases that damage human beings beyond repair (Genetic Testing. 2013.). The positive side is that plans for treating these genetic enhancements do exist already. One way to help people is through genetic enhancements on muscles. This can be used to help slow or stop muscular dystrophy and could prove to be very helpful for the older population. In some cases muscle degeneration is reversed, so the person will continue to get stronger. The other enhancement would be one that stimulates the brain to improve memory. This has been tested on mice and it has helped the mice learn how to run through a maze faster and remember things longer , even into old age, and the enhancement was even passed on to offspring. This genetic enhancement would be most beneficial to those with Alzheimers and those with other memory disorders (Sandel. 2004.). The amount that scientists can already do with genetic enhancements is astonishing; however, the ethical boundaries are where some people get stuck when deciding whether or not to enhance themselves or their children. Ethical Boundaries Ethics is a huge discussion when it comes to genetic enhancements. The main reason falls on the fact that doctors are unable to obtain informed consent by an unborn person. This is known as the Doctrine of Informed Consent and it states that people cannot help other people without their consent (IEET.2008.). However, if this is true, how can doctors and parents be allowed to treat babies for an illness without their consent? After all, a baby cannot exp ress

this consent. The reason doctors and parents can treat babies for an illness is because of their legal guardians, or parents. Since genetic enhancements are to improve the overall health and life of the unborn person, the parents do hold the power to consent to the enhancements for their child. This makes genetic enhancements without the consent of the affected person legal and ethical, seeing as how this is practiced for children and infants. Now, when talking about adults, this informed consent is vital for anything being done to them, whether its for medical purposes or experiencing something dangerous, but since this is about unborn infants, the right to consent falls on the parents. This makes genetic enhancements on unborn babies ethical, which means it is up to the parents of the child to make the final decision on whether or not to act. Legislation Before discussing legislation in the United States on genetic enhancements and testing, it is important to know that there is no concrete legislation on the matter. However, there are rules that still must be followed in a laboratory setting that can affect the operation of testing and funding related to it. The restrictions on funding are provided by the Dickey-Wicker Amendment, which protects the rights of embryos. The amendment states that genetic enhancements can only be funded as long as the embryo is not harmed or destroyed as a result of the enhancements (Kearl. 2010.). This amendment can also be used to restrict germ-line genetic modification, or the enhancement of sperm and egg cells. Currently, the National Institute of Health does not fund germ- line genetic engineering, but the Food and Drug Administration does through a very strict set of guidelines. Since genetic enhancements are not just restricted to the embryo, this amendment did not affect the other forms of enhancements. As far as somatic

genetic modification goes (Gene Therapy), The National Institute of Health and the Food and Drug Administration have another set of guidelines (Federal Food, Drug, and Cosmetic Act [United States]). The Food and Drug Administration's primary job is to ensure the quality and safety of gene therapy products and that these products are properly studied in human subjects, while the National Institute of Health's primary roles are to evaluate the quality of the science involved in human gene therapy research and to fund the laboratory scientists who invent and refine the tools used for gene transfer clinical studies (Federal Food, Drug, and Cosmetic Act [United States]. 2010. Para. 13.). This can ensure safe practice of modifying genes before they are used in humans. It is surprising that there are no laws related to genetic engineering, considering how far its come and the impact it could have. There are even laws on genetic enhancements in Switzerland, which has had a large impact on the subject. This country seems to be pro- genetic enhancement as long as is it serves as a therapeutic treatment. The laws were set in place to guard against abuse related to genetic enhancements and to guard the human gametes and embryos. These countries put a big emphasis on not changing the qualities of the person and protecting who they are, while just changing a small problem like a disease. To regulate this, before commencing a clinical trial, the medical institute will be required to obtain approval from the institutional ethics committee to ensure that the trial respects ethical and quality standards (Embryonic Research Act [Switzerland]. 1998. Para. 5.). This agency evaluates three main things. They evaluate the risks relating to the product being tested; the risks relating to the clinical trial in protecting humans and the environment, concerning the possible destruction of genetically modified organisms into the environment and their capacity to survive, to reproduce or to transfer genetic material; and concern for any destruction of genetically modified organisms

into the environment during the clinical trial and during their transport, storage, and elimination (Embryonic Research Act [Switzerland]. 1998.). There are also many more countries with laws that govern genetic enhancements which should give the United States an idea of what should be placed to our its own legislation. Fixing the Problem The problem is that there is no legislation and, therefore, no way to properly fund the advancement of genetic enhancements. This, in part, has to do with the fact that many people do not have a clear understanding of how this works. The public needs a website which shows that genetic enhancements are the future of medicine and are an ethical phenomenon. A website is a great way for people to start learning about genetic enhancements and what they already do for society. This is also a great way to promote the future of modern genetic enhancements. Websites have proven to be useful for providing information; especially a government regulated factual website. This can also be used to promote fundraising, which is a great way to increase funding and creates public awareness and interest. We have seen the use of websites in conjunction with fundraising in the American Heart Associations efforts to get people to donate blood. We have also seen this in various cancer fundraising organizations as well, such as Pink Ribbon International with their iconic ribbons during breast cancer month. It is possible to raise awareness and increase funding, but it starts with a website and then a fundraising coordinator. This can also be what is needed to push the creation of legislation on genetic engineering in the United States.

10

Conclusion The exploration of genetic enhancements will help the lives of people and that is the aim of these enhancements, which makes it an ethical phenomenon. Some people may be biased, from certain religions or beliefs, but that is the same through all fields in medicine. Genetic enhancements is just the start of the future of medicine and will cure many diseases that patients suffer from today. However, there is still a long way to go before these enhancements can be used on human subjects. This is why there needs to be an increase in people awareness, funding, and legislation.

11

References Genetic Engineering and the Consent of Future Persons. (2008). IEET. Volume 18. Edition 1. Genetic testing. (2013). Columbia Electronic Encyclopedia, 6th Edition, 1. Genetics and Public Policy Center.2005. Federal Food, Drug, and Cosmetic Act [United States]. Genetic and Public Policy Center. Retrieved From: http://www.dnapolicy.org/policy.international.php?action=detail&laws_id=49 Genetics and Public Policy Center.1998.Embryonic Research Act. Genetic and Public Policy Center. Retrieved From: http://www.dnapolicy.org/policy.international.php?action=detail&laws_id=47 Human Genome Project Information Archive. Retrieved from http://web.ornl.gov/sci/techresources/Human_Genome/project/index.shtml Human Genome Project. U.S. Department of Health and Human Services. Retrieved from http://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=45 JB. (1996). Ethics of Human Genetic Enhancement. Stanford University News Service. AAAS '96: Session 2:30 p.m. Saturday, Feb. 10. Retrieved from http://news.stanford.edu/pr/96/960212aaasmiller.html Jones. (1999). Genetically Modified Foods. British Medical Journal. 318(7183): 581584. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115027/

12

Kearl, Megan, "Dickey-Wicker Amendment". Embryo Project Encyclopedia (2010-08-27). ISSN: 1940-5030 http://embryo.asu.edu/handle/10776/2050 Nuland, S. B. (1998). Narcissus looks into the laboratory. American Scholar, 67(4), 125. Rosen, M. (2013). Story one: Human cloning advance raises personalized medicine hopes: Embryonic stem cells made with nuclear transfer method. Science News, 183(12), 5-6. doi:10.1002/scin.5591831203 Sandel. (2004). The Case Against Perfection. The Atlantic Monthly Vol. 293, No. 3. Retrieved from http://www.catholiceducation.org/articles/medical_ethics/me0056.html Vogel, G. (2000). In Contrast to Dolly, Cloning Resets Telomere Clock in Cattle. Science, 288(5466), 586. 2012. The Human Genome Project. National Human Genome Research Institute. Retrieved from http://www.genome.gov/12011238