Quote: “We have to be thinking very broadly about how genetic information should be used—not only in a medical context, but also how that information could be used in employment settings and law enforcement settings and national security settings. Information can be useful for lots of different purposes, and the question is, which purposes are acceptable?”

Yes, but we already know this! So let’s debate how these issues should/could be handled. I will write up a lengthy response later tonight for my thoughts when I have some free time. What are your thoughts?

*** The following are my own personal opinions ****

How should genetic information be used? Genetic information should only be used for informational purposes that can be beneficial for a patient. There should be no need for gene patents! For example, what risk do you have of your child inheriting a genetic condition? What genetic conditions are you predisposed to? How will pharmacogenetics be beneficial to you as a patient? What expressitivity level do you have for a certain genetic condition (variable gene expression)?

Employers should not be allowed to know a person’s genetic information and insurance companies should not deny health coverage for those with a genetic condition (more on this below). I have seen many news articles published on the Internet about complaints from people who have had trouble getting health insurance after they disclosed a genetic condition. Obviously there should be legislation to prevent the insurance industry from refusing someone insurance, or charging a higher premium on the basis of a predictive genetic test. GINA should be passed some day. It’s currently be held by a represnative from Oklahoma. The legislation should include prohibitions against using personal medical information to discriminate against people in hiring and in providing health insurance. Here is the tricky part of this. The current legislation is based on those who already have a genetic condition. So this legislation is not as useful for those who are at risk of inheriting a genetic condition (the unborn baby). Thus, I recommend that a person could test for a genetic condition privately and carrier testing privately, and then take out long-term care insurance (this can still be a draw back for those testing positive with polygenic diseases). For example, there is a strong genetic marker for the early onset of Alzheimer’s disease. Yes genetic testing for AD can be useful. Just because there is no “cure” for a condition does not mean that a genetic test should not be offered (with the option to have the test done still be left to the patient). Many preventive measures can be done and a person can live a life they wouldn’t know they had to live if they didn’t know they were going to die early from a devastating disease. This is why I support genetic research a lot more then a lot of other biological research that is funded. Yes all research is important (in theory), but some research is more important then others.

The fear that Americans have about knowing their genetic information is not complicated. I think its actually really simple to understand. For example, a poll in 2000 by the National Center for Genome Resources found that 63 percent of workers would not take genetic tests if employers could get access to the results. How many of these 63 percent of respondents even know what a gene is and what knowing your genetic information really means? I have spent many years (I’m 26 years old) working with the “average” person. The average person generally does not know what a gene is and what it means too know their genetic information. When my co-workers ask me what I’m going to school for and then I explain to them what I want to do as a career, they become fascinated with how genetics work. For example, one female co-worker was wondering why her dad was bald and how her brother (26 years old) is half-way bald already and why I have a full set of blonde hair as a 26 year old. So I explained it to her and she wanted to know more about how you inherit your phenotypes. I didn’t go into any great detail and just explained about the sperm, egg, dominance, recessive, and sex-influence.

Only educating people that go to college about knowing their genetic information is not as useful as people think. Most college students fear science! I dislike it when a professor tries to go into great detail when talking about how genes function to the average person. The average person only needs to know the very basics. For example, how does a mutation lead to a change in phenotype and how does this relate to treatment of a disease, variable expressivity of a genetic condition, how does dominate and recessive inheritance work, and so forth. The average person does not need to know about exons, introns, TATA box, tRNA, and so forth. I think a counselor can provide the in-depth knowledge to an individual or family that has a genetic condition, since this situation is more appropriate.

I personally think that the most effective way to educate the masses about how genes function and what it means to know your genetic information is to educate them via the TV and big screen. I also think it would be somewhat effective for genetic specialists to visit local high schools and just educate the students about this type of information before they head off to the real world (I think its hard to reach a person once they head off to the real world). A popular movie that has a small genetic plot in it will educate more people then any other method. If popular TV shows would have a genetic plot in it would also educate more people about this type of information then most other methods. Having a tv special about your genetic information would also be useful, but only those who are interested will watch it.

I think that genetics is going through an over-hyped social craze right now. There are not enough genetic specialists out there in the United States to effectively take on the patient load that would result if all physicians referred all patients with a genetic condition or those who need a genetic test done. We need to educate today’s medical students in clinical genetics. I have see many, many pre-med students diss the field of genetics and blow if off as easy and an unnecessary class to take. There are also not enough effective treatment options out there for the majority of genetic conditions. It’s good to have all of these clinical tests available to diagnose a patient with a genetic condition, but what is even more important (with the correct diagnosis being the most important aspect) then having all of these clinical tests available is treatment options. Fetal therapy is a young field and a lot of surgeons do not participate in fetal therapy treatments and health insurance is lacking in this area of coverage. There are 4,000+ genetic conditions that have been published in the literature and there are only 1,000+ genetic tests available. I think the future of medicine lies in the field of genetics, but more funding needs to be put into treatment developments…but we need to know the molecular mechanisms of disease development first. This now leads me to the craze over genome wide association studies that show a genetic link for a disease (like heart disease and diabetes). Genome wide association studies are VERY important, but they are only the start of the process for effective clinical care. Once we know where a disease causing gene is located, we then need to know how the gene functions and then develop treatments. There are some genetic tests being developed based off these genome wide association studies. This is ok if the disorder is a non-polygenetic disorder. Only having one genetic test available for a polygenic disease when there are obviously many disease causing possibilities doesn’t really do much of a benefit for the patient besides telling them that this chromosome locus does not put them at an increased risk for developing the disease but you can still fully well develop the disease. If more genetic links are shown to cause the polygenetic disease, then a genetic test should be developed that will test ALL of the chromosomal loci that have been shown to cause the disease.