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