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Gene Therapy

Positive Eugenics

Bioethical Question

Does the beneficial use of eugenics (gene therapy) outweigh the potential harms?


Background

What is eugenics?

Oxford Dictionary: Eugenics – is the science of improving the (especially human) population by controlled breeding for desirable inheritable characteristics.

What is the history of eugenics?

In 1883, Sir Francis Galton coined the term eugenics believing that the human race should selectively breed to isolate “desired traits.” In the 20th century, women were being sterilized without consent to remove “undesirable traits.” In America, it is estimated that 65,000 women were sterilized. (This included mental illness, alcoholism, disabilities, criminality, poverty, promiscuity, certain minorities, etc.) After WWII, eugenics lost credibility as people realized the unethical nature of eugenics through Hitler’s practices.


Debate

Pro

  • The technology has the potential to cure certain genetic disease/disorders.
  • The technology may allow for an immediate cure, which would decrease time of treatment.
  • The decline in the duration of treatment will lead to a decrease in the cost of treatment.
  • Research for gene therapy may increase genetic screening technologies.

Con

  • Manipulation of germ cell line can potentially affect future generations.
  • The child has the right to be treated as an autonomous individual, which may be compromised if prenatal gene therapy is implemented.
  • The subjectivity of perfection to culture, location, time period, and other variables that cannot be accounted for makes it difficult to choose a “favorable” or “perfect” feature.
  • Those who are wealthy can purchase the technology and those who are not may be ostracized by society. This can exacerbate the wealth gap.

Current Events

The Center for Investigative Reporting found that approximately 148 female inmates from 2006 to 2010 were sterilized illegally in California prisons without the required consent or state approvals. In another example, Oliver Wendell Holmes approved of a tubal ligation of a teenage girl who gave birth out of wedlock after being raped by a relative.

Huffington Post: “Female Inmates Sterilized Illegally In California Prisons”


Regulations

  • Department of Health and Human Services have oversight of clinical trials.
  • All must comply with regulations set by the Office for Human Research Protections, US Food and Drug Administration, and the Code of Federal Regulations.
  • National Institutes of Health oversees conduct of federally funded clinical trials.
  • Human subjects will undergo an Institutional Review Boards review.

Clinical Trials

Exon skipping is a type of gene therapy that proposes that those genes be corrected instead of replacing a defective gene. This is one of the many ways in which gene therapy can be manipulated to treat and cure disease.

In the case of Duchenne muscular dystrophy it is theorized that exon skipping can be used to develop a treatment for 83% of Duchenne patients. The first large scale clinical trial to induce exon skipping to treat Duchenne muscular dystrophy used a drug called drisapersen. It was developed by a dutch company called GlaxoSmithKline and Prosensa. However, this proved unsuccessful and the dutch company that developed this drug lost 70% of value in their stocks.

This lead to another clinical trial using a drug called Eteplirsen, which was developed by Sarepta Therapeutics. It studied 12 boys: two lost the ability to walk soon after the trial began, but the others had an average decline of 6% over 84 weeks, a large improvement. Those who received the placebo has since been switched to the drug, which has stabilized them. It was approved by the FDA in 2016 as the first drug for Duchenne muscular dystrophy.


 

Bibliography

Citations

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COMMENTS: 5
  1. April 27, 2018 by CC Yin

    Hi Madoka! You’re project is super interesting! I like how you add to the knowledge gained from the bioethics course and expand on your own ideas. I also think your formatting is awesome and your project, overall, looks very clean, organized, and intentional. Great work!

  2. April 28, 2018 by Sydney Martin

    You have a good project here – very informative. What is your opinion on gene therapy? Do you think the benefits outweigh the potential harms? Also, you have a title for your Bibliography, but then you have no citations under it. Just wanted to let you know. Your formatting is very clean, which is good, but you could’ve added a picture or something to draw some attention. Good job overall with the research and formatting though!

  3. April 29, 2018 by Ian Covel

    I love the idea of eugenics with a positive agenda, and am very interested in the application of gene therapy and how it relates to ethics. Your research has prompted me to do a little of my own, because I may someday want to study something like this myself. Thank you!

  4. April 29, 2018 by Porter

    I really like your work on this project. Great research and application of your knowledge. We studied a little about this issue in school and we also opened the floor up for debate, which was pretty cool. I hope more people get involved with their opinions as this becomes more and more prevalent in the future.

  5. April 30, 2018 by Michael.Shade

    This is a very interesting topic! I did not know much about it before reading. It is weird, cause this technology is the stuff of science fiction; we literally have movies on why this is a good idea, and why it’s a bad idea. I think thats why the topic can be so polarizing.

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