ethics of gene therapy

What is the role of the citizen in gene therapy?

What does the average citizen have to contribute to this new technology. As you can see on the rest of this page this is a very controversial topic which demands careful thought. This is were the average citizen comes in. It is their job to ask questions of those who are conducting the research. By answering to the public it makes these researchers and politicians more accountable. They will be forced to consider the ethical aspects of this great new technology as well as the scientific aspects.
At the same time it is the responsibility of the researchers and doctors to educate the general public advances in the area of gene therapy. This will help to reduce confusion and to quell rumors put forth by opponents of gene therapy. This also alleviates the inevitable fear that accompanies breakthroughs of this nature. If the general public is aware of what is going on and what can actually be done with the techniques they will fear it less and be more open-minded about it.

What is normal and what is a disability or disorder, and who decides?

Since each person is thought to be unique and different and through the Human Genome Project and advances in molecular biology we have shown this to be true on the level of DNA how can we come up with guidelines on what is considered to be normal? Everyone undoubtedly has some defects in their genome, does that mean that no one is normal? Is it possible to define normality of a genome based on the phenotype that a person displays? This leads to another question: Does a person who has a defect in their genome but shows no adverse phenotype have a disorder? This would change the way we look at diseases and disorders. Finally, who gets to decide all of this? Should Congress decide? Maybe the United Nations should decide? There is no precedent to go by.

Are disabilities diseases? Do they need to be cured or prevented?

We don't generally classify disabilities as diseases now. Will we have to rethink this in the future? If legislation is passed that states that gene therapy can only be used to cure diseases will people with disabilities be left out? What about those people who are blind because of a genetic defect? Those people who can't hear because of a genetic abnormality. Of course there isn't much that gene therapy can do for them but it could help their children. If two people want to have a child but each parent is the carrier for a deafness gene should they be allowed to undergo gene therapy the same as someone with a gene for Parkinson's Disease? There is also the question of whether or not it is right to prevent such disabilities. Some would say that these are the types of things that make us individuals. By treating them we are removing this aspect of individuality and we are sculpting these people into what is considered to be a social norm. Again, who decides this?

Does searching for a cure demean the lives of individuals presently affected by disabilities?

By simply searching for a "cure" to these disabilities are we somehow making those who currently have the disability seem abnormal in a sense? This is a new concept because in the past there wasnt much research put into curing people who have a disability but rather the research revolved around helping those people live a normal life with the disability. Who are we to demean their lives by searching for a cure for what is apparently wrong with them according to the rest of society? Could we possibly be doing more harm to these people psychologically? Again, who makes the final decisions on topics like these?

Is somatic gene therapy (which is done in the adult cells of persons known to have the disease) more or less ethical than germline gene therapy (which is done in egg and sperm cells and prevents the trait from being passed on to further generations)? In cases of somatic gene therapy, the procedure may have to be repeated in future generations.

Which is more ethical? Is it more ethical to treat someone who is an adult and can essentially make the choice on their own or is it more ethical to completely eradicate the disease from that gene line altogether by performing therapy on the egg and sperm before they join? Is it ethical to remove that disease from existence using gene therapy? If you step back and take a look at science and medicine in the past 100 years that is essentially what we have been trying to with all diseases. Now we have a way to accomplish this task with a select number of genetic diseases. Is this right? Should we have this power? Many say yes and many say no. Some say we are trying to play God while others claim we are altering the course of natural evolution. Is this right?
One thing to keep in mind is that if gene therapy is performed on germiline cells it is a permanent fix for all descendants of that person. However, if we use somatic cells the procedure will have to be repeated in every future generation to come. Is it better to take care of it now or should each generation be given the opportunity to decide for themselves?

Preliminary attempts at gene therapy are exorbitantly expensive. Who will have access to these therapies? Who will pay for their use?

Perhaps one of the most pertinent question as far as the general public is concerned concerns the cost of gene therapy treatment. Who will be able to afford such treatments? Will this be something that is only accessible to those people with large bank accounts? Is it really ethical to put a price on such treatments? If we limit this therapy to only those who can afford to pay hundreds of thousands of dollars are we making the upper-class genetically superior? Is this a procedure that we should make accessible to every person equally? If this is the case how will we pay for it? Medical insurance carriers are not likely to cover such treatments since they aren't allowed to set premiums based on genetic information. Will this be something that is covered by Medicare and Medicaid? It has taken nearly 50 years for Chiropractics to be covered by the government, how long will it take for them to cover gene therapy as well? Since gene therapy is a preventative treatment it isn't likely that the government agencies will pick it up anytime soon. This leaves the cost in the hands of the public and we end up with the same issues we started with above.