Benefits and Obstacles of Genetic Sequencing

   The Human Genome Project is the largest scientific endeavor undertaken since the Manhattan Project, and, as with the Manhattan Project, the completion of the Human Genome Project has brought to surface many moral and ethical issues concerning the use of the knowledge gained from the project. Although genetic tests for certain diseases have been available for 15 years (Ridley, 1999), the completion of the Human Genome Project will certainly lead to an exponential increase in the number of genetic tests available. Therefore, before genetic testing becomes a routine part of a visit to a doctor's office, the two main questions at the heart of the controversy surrounding genetic testing must be

Anything outside of our permission or control is considered an assault. Despite our beliefs and what should be, this was quite contrary with Henrietta Lacks. An article in The Scientist noted “The global rise in biobanks – currently a $1 billion industry that is expected to grow to $2.25 billion by 2015 – also introduces other ethical concerns, including patenting of biological materials, whether donors control what happens to their tissue, whether donors should be compensated, and the privacy issues dramatically highlighted by the online publication of the HeLa genome.” Enhancing public awareness is paramount around this topic along with engaging in the ethical complexities effectively, which in the end could build awareness, boost trust, and improve an understanding around the purpose of biobanks and how they operate. Henrietta Lacks case presented a beneficial context for analyzing the legal and ethical issues that may be raised when human tissues are being used in medical research.

Bodily privacy is a significant issue in Genetic Profiling, as it is a human right which is in constant need of law reform. Technology is continually advancing, and genetic

Technology can be amazing if used in the right way and not used to harm people. The genome project leaves endless results of what is achievable through technology. Could someday, someone build an entire human from xenotransplantation. Could someday, there be a drug where you will never die anymore. The life expectancy from the last one hundred has already risen fifty percent to seventy-five years due to medicine. Who says this can’t keep growing now that it’s almost possible to have a xenotransplantation where you could get a “brand new heart or lungs that were grown in a pig.” Also, the fact that we can now predict what disease a baby is going to or can have by ten weeks after they are conceived, makes me wonder are we ever going to have worry about getting a surprise new health condition in our life.

In recent discussions of medical advancements, a controversial issue has been genome mapping poses risks to its patients. On the one hand, some argue that it is going to be time consuming and costly. On the other hand, however, others argue that this can be a breakthrough in medicine. In sum, then, the issue is what America’s next step towards medical advancement is going to be. While some believe genome mapping poses many unseen risks, genetic testing can help identify unsurfaced illnesses.

Our incessant curiosity for knowledge and answers has prompted the intricate research institutions we know today. Among the volumes of research, scientists have searched for innovations to better understand the human body and edge closer to more individualized medicine. In 1990, breakthroughs in genetic technology allowed for researchers to begin a quest to map and understand all the genes of human beings. A mere 13 years later and just shy of $3 billion invested the Human Genome Project successfully mapped the billions of base pairs involved. With the ability to diagnose specific abnormalities, researchers and medical professionals have saved hundreds of ill children to which their survival was indefinite. However, with scientists continuing

The Goal of the Human Genome Project is to obtain genetic mapping information and to determine the complete sequence of all human DNA by the year of 2005. The project started in 1990 and 180 million dollars are being spent on it annually. This adds up to a total of over 2 billion dollars for the 15 year budget. Of this 2 billion dollars budgeted, 5% is spent annually on the ethical, legal and social issues. This report focused on some of these issues.

The Human Genome Project introduces significant scientific findings to the world, but raises a lot of controversies. Many of these controversies concern the application of this new scientific finding and its ethicality. Genetic information from a project, once aimed towards mapping the human genome in hope for curing diseases, are now being used in businesses. It shouldn’t be permissible for employers to require that all employees, as well as potential employees, be screened for genetic vulnerabilities and to use the results of such screening when they make hiring, retention, and job assignment decisions. These genetic vulnerabilities may include diseases, unsuitable personality traits and other traits the company deems undesirable. Employees shouldn’t be judged by their genes, because the results do not adequately speak for what the employees will do in life, the employee’s position in the society, and the employee’s financial standing. Genetic testing should be an option for the employees to decide on job assignment rather than influence the hiring decisions of employers. Genetic testing only shows genetic potential, not potential growth. Conducting genetic testings on employees infringes on their privacy and encourage more social gaps with genetic classes.

Often, with the discovery of knowledge come difficult questions, thorny ethical issues, and unintended consequences. Armed with this new ability to sequence human genes, science grabbed medicine by the hand and charged into uncharted territory. Could we now “personalize” medicine?

There were approximately 300 genetic tests available that time. It is significant to note that the reference sequence of human genome was completed by Scientists in April 2003 (Hudson et al, 2008) and current genetic tests encompass over 1500 conditions. Barclay and Markell (2007) explained the ability to establish and document a person’s genetic composition is known as genetic mapping. It must be noted that genetic mapping was achieved through the Human Genome Project (HGP) as a collaborative international research program (Barclay & Markell, 1999). Genetic information was considered to be adequately different from other health related information thus the need for special legal protection (Ginsburg,

Genetic information can be identified at any point throughout a person’s lifespan from pre-conception until after death. In addition to heritable, biological information, family history, genetic test results, and medical records are also sources of genetic information” (Jenkins & Lea, 2005). We are put in a position to gather and retain information that could be utilized for a better future, but is confidentiality involved for the sake of profiting? Ask yourself, who should have access to genetic information? Who owns and controls it? How can families resolve conflicts when some members want to be tested for a genetic disorder and others do not?

During Dr. Whitfield’s seminar, he discussed his recent research on a rare disease known as systemic sclerosis. From my understanding, systemic sclerosis is an autoimmune or connective tissue disease that causes thickening of the skin and injuries to the vascular system. This disease causes death when significant organs are affected. However, Dr. Whitfield’s research requires sequencing a person’s entire genome in order to give them proper treatment. Systemic sclerosis has subsets that respond to treatments differently, but to precisely identify the specific treatment a patient may need, his or her entire genome sequenced. People are hesitant about being compared to their genetic determinism, so this raises ethical concerns. I, for one, believe

Genetic research has furthered our understanding of the human genetic makeup and has created the potential to transform medicine. This potential is not just limited to medicine, but the potential to further research and monetize the human genetic makeup. Through gene patenting, the monetization of genetic material can provide for a financial incentive for researchers and institutions to further innovation. The developments in the ability to patent genes and the laws surrounding gene patents has raised concerns of the ethical and medical issues as highlighted in authors, Michael Crichton’s article “Patenting Life” and John E. Calfee’s article “Decoding The Use of Gene Patents.” Both authors (1) share similar views on the ethical concerns and research results. (2) Calfee differs by explaining further that

The fear of genetic discrimination is a phobia gripping many people around the world. People find themselves asking, could my genetic information raise my health bills? Could this cause me to be rejected from a job opportunity? These anxieties are causing people to lash out at genetic research, and ultimately the human genome project. People do not want our understanding of human genomics to advance. This is because the risks of the development of the technology could inflict on them. A major risk is genetic discrimination. I believe that genetic discrimination is wrong and governments should continue to prevent it because it is an invasion of privacy, it violates equity, and it could really hurt people with genetic

The Human Genome Project (HGP) completely mapped human DNA for the first time in April, 2003. In addition, the HGP revealed that there are probably about 20,500 human genes, which is significantly fewer than originally predicted. This ultimate product of the HGP has given the world a resource of detailed information about the structure, organization and function of the complete set of human genes. This information can be thought of as the basic set of inheritable "instructions" for the development and function of a human being (genome.gov, 2016). T. K. Barger informs us in his article titled Ethics Key as Study of Human Production Advances, that “Now they state that it is time for the next revolution: genome synthesis, engineering, and editing…to make the human genome artificially.” Furthermore, he states that the goal of making an artificial human genome is not to manufacture complete humans, but to grow transplantable human organs, engineer immunity to viruses in cell lines via genome-wide recoding, engineer cancer resistance into new therapeutic cell lines, and accelerate high-productivity, cost-efficient vaccines and pharmaceutical development using human cells and organoids (Barger, 2016). Synthetic body parts, such as organs, could be produced and used to save and preserve life.