Airing on PBS Sept. 16, 1997   9-11 PM
A Question of Genes vote
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What do you think?

Would you want to undergo genetic testing to learn if you were predisposed to a disease for which there is no treatment or cure?

At this time I would have to say that I just don't know. It is an extremely hard decision and I am the type of person who would probably let a result like that plague my life.

-- Dana Steffan

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Yes. The reason for this decision is in understanding my genetic makeup I can insure the future of my offspring by choosing a mate not possessing the same trait or choosing a mate possessing the trait and being able to prepare myself for a child that would need special care.

-- Wolf

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Genetic testing poses a promising future for our society. However, I feel that it is a shame for people to base the "chance to live their life to its fullest" on whether or not they will die soon. One shouldn't look at it in such a pessimistic way. Live life today and every day as if it were your last.

-- Rosanne Torqueza

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I would have to answer yes, but with reservation. The results of any tests would have to remain confidential. Too many people have access to information that could possibly ruin a person's life, career or family. Having the knowledge of such information may induce a change in lifestyle for a positive result. Living in a capitalist nation, I would think that more than a few corporations would want to exploit people's emotions to a point of hysteria just to earn a profit. There are serious implications when dealing with information that is this powerful.

-- Dr. D. L. Anderson

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Any moral person considering having children should appreciate the opportunity for genetic testing, to insure against defective offspring. I believe that this testing must become compulsory as a condition of marriage and reproduction, if mankind is to survive in an era of overpopulation and diminishing food supplies. Our society must come to grips with the reality that mental/physical birth defects are predictable and preventable. We can no longer afford to allow irresponsible emotions and impulses to destroy the future of the human race. When will we begin to think and act as a mature, intelligent race of human beings, instead of animal-like creatures dominated by greed, passion and fear?

-- Anonymous viewer

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From a societal or policy viewpoint, choosing whether or not to undergo genetic testing must be bound by three principles: beneficence (maximize good), maleficence (do not knowingly cause harm), and autonomy (self-determination). Together, beneficence and maleficence suggest that we as society should not offer testing for which no palliative or curative treatment exists. However, autonomy refuses to let the rights of the individual to self-determination be subjugated. The controversy surrounding genetic testing cannot be resolved until we decide which needs -- those of society or those of the individual -- are primary.

-- Anonymous viewer

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This is not a question to which I can answer yes or no, as I can only guess how I would feel if I was in an "at risk" situation. I do know that I would undergo counseling and seek as much advice and information as I could before making a decision on whether or not to take a genetic test. In other words, I would want to be fully informed and to understand the potential ramifications of taking the test before I made that choice.

-- Jeanne Reeve

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I agree with Dr. Rader, a qualified yes. If I could be sure that getting a positive result would allow me the information I need to responsibly plan my life and reproductive strategies without having my insurer, employer, etc., have access to the information unless I give it to them, I would definitely be tested for every genetic marker that I might be at risk for, especially breast cancer. On the other hand, if absolute confidentiality cannot be guaranteed, then I would not be tested unless I was already exhibiting symptoms. In the case of a disease that is already being expressed, I would owe it to my children to find out if they, too, are at potential risk.

-- Anonymous viewer

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Yes I would. I think the knowledge is more important than the possible detrimental affects. I do think that people should be protected from others having access to such knowledge. A person should not be discriminated against because of the results of the test either socially or economically.

-- Gerard E. Trigo

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How far are we going to go? You have only touched the tip of the iceberg. I think we need to ask a greater question, though unpopular. With the breakthroughs in modern medicine, we can cure almost anything. Here in Boise, Idaho, all we heard for a year, was about this poor girl who needed and got a 7-organ transplant. Where do we draw the line? I'm not saying to deny life, but when mother nature and eons of selective survival of the fittest determining the gene pool suddenly get changed, are we going to better ourselves out of existence? Why not perform necessary operations with the understanding of sterilization to avoid passing on known defects?

I'm not talking about minor afflictions etc. I'm not an expert to decide on one organ or three being needed, but 7 screwed up organs is a pretty good indication that something is wrong in the genetic pool there. Then we wonder why we pay high taxes and health insurance. It's time to stop thinking with our hearts and being politically correct, and exercise some common sense. This probably sounds harsh but think about it. Has this issue really been addressed?

-- Lee Lichterman

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First and foremost, confidentiality of the testing and results must be ensured. Genetic testing is of particular interest to me because I am an adult adoptee, with no medical history. However, the only genetic testing I have pursued was prenatal testing for potential birth defects of my children. I have not yet pursued any other genetic testing.

-- Anonymous viewer

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To Lee in Idaho: Yes, this whole issue was discussed years ago. The idea of sterilizing "defective" human beings had a whole science to call its own. It was called Eugenics and Adolf Hitler was an enthusiastic follower. Though he took the idea to extremes, many countries, even the U.S. and probably states like Idaho, regularly practiced sterilization of those who could not protect themselves -- retarded people, women, the poor, even those who were short sighted were targeted in some cases. If you look at recent news coverage of Switzerland, you'll see that even the most sophisticated and passive of nations regularly practiced Eugenics on its population. Hope you never have a "defective" child or grandchild. If you do, it might not be real easy for you to suggest that sterlization of that child could be in the best interests of the human race. Shame on you.

While I agree that common sense is sometimes not used, and children especially suffer because doctors just don't know when to let go, I have seen my own child suffer a "cure" at the hands of doctors who saw him as a "case," not a human being. They felt they had to succeed no matter what and the fact that he was suffering had no bearing on their actions. Somehow their ego was at stake if they failed. However, I would like to believe that most doctors have a patient's best interests at heart and that even the most "defective" human being can have quality of life and be able to contribute to society in a meaningful way.

-- Ann Bishop

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I do not see the point in knowing you are likely to get a disease which cannot be treated or cured unless you are considering having a family and the presence of this gene could have implications for the health of future children. Since I have had all the children I am going to have, I would not get the test. However, I would consider testing for an inherited disease that is treatable, cureable or maybe even preventable with a change in lifestyle.

-- Anonymous viewer

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Yes, I am 54 years old. I believe I would. I currently have epilepsy and in the last three years my daughter has been diagnosed with it and now her daughter diagnosed -- I'm very interested. My father died a year ago of Alzheimer's -- yes, I want to know if I'm predisposed to it. I'm not sure I wouldn't think about obtaining long term care insurance "before" I would be tested though.

-- Ann

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To have quality in life may be afforded by the knowledge of these genes. Perhaps there is some hope with research to delete or lessen the problems caused by these genes. There definitely needs to be a way to know and also a way to keep it personal.

-- Anonymous viewer

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Yes, I would undergo genetic testing. I am considering it now because of ovarian cancer. My mother died from it and I am now a survivor of it. I also am considering testing for my daughter. My fear is confidentiality because of insurance ramifications.

-- Anonymous viewer

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Yes I would. Just to help me prepare for the day that the disease starts to show itself. Also it is good to know if you have a genetic disease so you can avoid having children so they will not have to live with the disease.

-- John Ray Harshbarger Jr.

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Genetic testing at this stage is a mixed blessing. I have undergone testing for Ehlers-Danlos Syndrome Type IV. There is no treatment for EDS. It is a mutation of the gene that produces procollagen 3, which is essential for connective tissues. From the research at this point, people who have EDS Type IV don't have long lifespans. On the one hand it explained the premature deaths in my family. On the other, it has been emotionally draining to know that my life may very well be much shorter than most people and there is nothing I can do about it.

One must be able to deal with the consequences of such information. It is helpful for life planning, but from an emotional perspective, it has been very hard to deal with.

-- Anonymous viewer

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I remember Hitler and his perfect Aryan nation and this, to me, smacks of the same thing -- if a baby will not be perfect, then destroy the fetus.

-- Anonymous viewer

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No, not before the age of 65. If your family has a history of a particular disease likely resulting from a mutated gene, then you know already you are at a possible risk. Also, there are many other diseases for which the causative mutated gene has not been isolated. Knowing you have a mutated gene does not preclude you from being at a higher risk for another disease.

There are many things that could happen to one that are tragic, so what is the point of knowing you have a mutated gene that you cannot do anything about but become familiar with the particular disease? This appears to me to be wasted time and the promotion of unnecessary anxiety. Now if there is a cure or possible reasonable prophylactic surgery, then I would be tested.

-- J.P. Morella

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Yes, and there are personal reasons. My maternal grandmother died of kidney failure. Years later my older sister was in and out of the hospital with "kidney stones." It was not until she passed five years ago that the truth came out. She had one of the forms of PKD, an inherited genetic disorder that eventually destroys the kidneys. I have had kidney problems for years and when checked I found that I too had this disorder, but a variant which effects the liver rather than the kidneys. My nephew (my older sister's youngest son) has severe PKD and his kidneys are now 3-4 times normal size and full of painful cysts. Had I known of this genetic problem in my family I would have made different life decisions. I have another brother and sister with large families, grand and great-grand children. Onset may start when you are quite young or later in life.

-- Daniel Schommer

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No. I am afraid I would feel doomed -- and not much reason to try for any kind of a future. If there were a chance of treatment, I believe my feelings would be different.

-- Anonymous viewer

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No. We have colon cancer in my family, and I know that there is marker testing (risk susceptibility) available. Perhaps I am fatalistic in outlook, but I know that hoping that I might not have inherited the increased risk is better for me than knowing that I have inherited it would be. I would not change my behavior or lifestyle in any ways other than what I have already done. Regardless of my risk for any condition, I would never have prophylactic surgeries of any type and in fact, after seeing what my family members have suffered at the hands of the egotistical medical professionals, I would not be interested in their poorly understood and poorly documented preventive screenings either. Insurance companies and others could consider a genetic predisposition or condition as pre-existing regardless of when one learned about it. I believe that no one should be made to feel obligated to have testing.

On the other hand, many will agree that the person from Idaho makes a good point. Reproduction is not necessarily an inalienable right. People need choice in how much information they want as well as in how the information should be used.

-- Anonymous viewer

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I would like to know because then I could make arrangements for myself and my family. There are a lot of things I want to do before I leave the world behind.

-- Chris Paley

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Yes, I would undergo testing. I think that knowing one has an incurable disease or is predisposed to it would shock them into living life as I think it should be lived, appreciating every moment one has as the priceless gift it is.

-- Catharine J. Hunter

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Although I voted no, I would want to get tested to see if I was a carrier of some disease-causing allele that could be passed on to my children. I would want the option to terminate a pregnancy like the Hamptons chose to do with their second pregnancy. This raises the question: Is it morally right for an individual to terminate more than one pregnancy when the child has the lethal allele?

I voted no because whatever the results were, it would be on my medical records. Today privacy is a rare thing, especially when so much is passed along the Internet super-highway, and the drug companies and insurance companies have access to more than what they should.

-- Anonymous viewer


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