Beyond Bioethics Chapter 23: What is Your DNA Worth?

            For my final presentation, I decided to expand a bit on what I researched for my midterm, which was the causes of excessive hype surrounding the field of genetic research. I have been further researching one of the causes of this, which is the empty guarantees and unreliable promises coming from companies and institutions that are referred to as Big Genomics. Lots of doctors are willing to sensationalize successful research, indicating it to be a promise of a brighter future through genetics. However, these scientists often fail to fairly or accurately represent the failures of these experiments, often focusing the spotlight on successful data while ignoring the greater whole. The author of Chapter 23 of Beyond Bioethics, David Dobbs, explains Big Genomics, the big-data branch of human genetics, to be following a specific cycle. He describes this cycle as alluring hope, celebratory hype, followed by dark disappointment. The hype surrounding the hope and the silence surrounding the disappointment is what he describes as the Age of Genomics.

This isn't something that has emerged recently, however. Nathaniel Comfort, a historian, refers to the past of genetic research to be "a history of promises," in The Science of Human Perfection. In 1905, the term genetics was coined by William Bateson, a geneticist from Cambridge. Within 22 years, genetics was promised to be the cure for cancer. This was further strengthened when Franklin, Watson, and Crick created the double helix base model for DNA. Upon observation of this model, the gene seemed to be a promising link in the chain towards wide scale disease prevention. However, when the Human Genome project revealed missing parts of the model and gave us a better grasp of DNA and genes, it was nowhere near what the scientists predicted. The more they learned about how the human genome was constructed, the more they realized they know less and less.

Nevertheless, scientists focused on the hype surrounding genetic research as opposed to their shortcomings and started genome-wide association studies (GWAs) which were engineered to identify recurring genes with an association to things such as diabetes, schizophrenia, or even intelligence. This is even done at the expense of medical patients, as Big Genomics turns hype into cash buy selling patients' health data to research organizations. However, the GWAs were not often successful in revealing consistent relationships between genes and specific traits, and instead found what were referred to as "many genes of small effect," or more affectionately, MAGOTS (many assorted genes of tiny significance). Almost all studies searching to find relationships in common diseases such as cancer, heart disease, and hypertension have resulted in nothing but MAGOTS.

While there certainly are drugs that have been developed and implemented into the population based on researching the genome, they are still nowhere close to the forecasts of genetically eliminating diseases. For example, the drug Gleevec was implemented in 2001 to treat leukemia, and has its basis in genetic manipulation. However, it is nowhere close to the potency that was expected in the past of being able to completely eliminate the disease. Therefore, it is obvious that these promises are unfounded, and are leading to issues of overfunding and patient misinformation. Dobbs proposes an alternative, where some of the money spent on genetic research is redistributed towards investing in ways to limit people's risk elevating behavior, such as smoking, lack of exercise, and overeating. While it would most likely not completely solve the problem, it would certainly be a step in the right direction.

Quiz Questions:

What year was the term genetics officially used?

Who does Dobbs blame for perpetuating all the exaggerated stories surrounding genetics?

What is the cycle that genetic research inevitably goes through?

What leukemia drug serves as an example of the progress of genetic research?

What does the media falsely report will be subject to someone’s genetic disposition in the near future?

How much was spent on the research and development of the Human Genome Project?

Where did Dobbs suggest the funding for genetic research go instead?

What bit of misinformation is part of 23AndMe’s marketing?

What facility is one of the biggest distributors of genetic information?

What is the bottom line business plan of most genetic testing companies?