Eugenics

usakat
usakat Member Posts: 610 Member
edited March 2014 in Colorectal Cancer #1
Hello All,

This morning Today Show featured a BBC story, which I discovered was old news after a little research, about a couple who utilized genetic testing of embryos to avoid giving birth to a child with the BRAC 1 and BRAC 2 gene mutation (predisposition for breast cancer, similar to HNPCC or FAP). Apparently the father was gene positive for BRAC 1 or BRAC 2, and both his mother and grandmother had breast cancer. He did not want to pass the mutation on to his children, therefore he and his wife elected to have their children conceived by in vitro fertilization and then have the embryos tested for the gene mutation prior to uterine implantation.

The couple had several in vitro embryos that were tested and of those a couple of the embryos did test positive for the gene mutation. These gene mutation positive embryos were then not selected for implantation - not selected to be born.

I have HNPCC - the genetic form of colon cancer. I inherited HNPCC from my mother (a four time cancer survivor), who inherited it from her mother. In spite of having HNPCC, having had cancer, and living with the understanding that I'm very likely to have future cancers, I'm glad I was born.

My uncle is 73 and is also positive for the HNPCC gene mutation, however he has NEVER had cancer. My cousin tested negative, but died of breast cancer. A positive or negative test result does not necessarily mean a person will or will not get cancer in some form.

With that said, herein lies the point of my post, does or can eugenics play an important role in cancer prevention, and more importantly, is it ethical? I can't help but think about that Build A Bear Workshop store you see in all the shopping malls across America where kids create their perfect furry friend and wonder if we're moving towards building never to be found perfect children in a similar fashion. Am I an imperfect child because I had cancer? Heck, NO!

Is this a situation where we are blinded by science?

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #3
    Hi Katie: This is the first I heard of eugenics, and I have to tell you, the idea makes me extremely uncomfortable. I have FAP, and I have a 2 1/2 year old son. I already went through the stress of deciding whether to have an amniocentesis (sp?) or not. When I found out the risk factors involved, I decided that my son was a miracle no matter what the outcome and that I would love him regardless. Is this any different than countries that abort their children if they are female? I really don't think so. Monica
  • sladich
    sladich Member Posts: 429 Member
    #4
    Katie,

    I agree. I wouldn't want to know.

    Debbie
  • crazylady
    crazylady Member Posts: 543 Member
    #5
    Hi Katie,
    I haven't been posting much, but I couldn't resist this one.
    I did not see the show, but am totally against trying to make perfect children in this way. As you point out people who don't carry the gene can still end up with cancer and those that do carry it may never have it. I am positive that everyone carries some undesirable gene. It doesn't make us any less as people.
    It personally worries me that people seem to have forgotten about the nazi's and what they were trying to do.
    So we aren't perfect. That's part of what makes us unique and interesting. As a mother, of course I would never want my children to suffer through cancer, but I can't imagine choosing which children to have. It doesn't seem ethical to me.
    Jamie
  • pamness
    pamness Member Posts: 524 Member
    #6
    Ok, ban me from the boards, don't read my posts, whatever. I am not in favor of selecting "the perfect child." However, if genetic testing was able to tell me that my child had a very strong chance - of developing an incurable disease, or an extremely devastating development disorder, I think I might take the less selfish route and choose to adopt a child that needs a home. This is very different than a test that says - there is a slight possibity. For example - look at Huntington's disease -- the odds are 50/50 with one parent and the outcome is 100 percent fatal - would you take that risk? I wouldn't. Most people with Huntington's die in their late 30's and early 40's in a way that is pretty horrific. That is a gene that needs to be gone from the population. Look also at Lou Gherig's disease, I watched my uncle die from it at 42, they don't have a genetic test for it yet, but I would never willingly subject anyone to that.

    I have a friend with the BRAC1 gene mutation - she, her sister, her mother, her aunt and her grandmother have all had breast cancer. So far only she and her sister have not died from it - they both had prophylactic double masectomies with 3 month follow ups. Neither could have children has they had them done fairly young after the cancer or precancer showed up and they elected to have chemo to prevent any possible recurrence.

    So they will not be adding their genes to the gene pool. I am glad, as are they that they were born, but they have no desire to pass it on.

    This isn't a question of "perfect children" and I find the comparision to Hitler abborant - I am Jewish - it is a question of intelligent choices - no child has to be perfect, but would you deliberately subject a child to a horrible medical future?

    By the way, I am not saying this without experience. Again, I am not advocating for "perfect children" but if you can avoid an almost certain horrific outcome, maybe that is not so bad.


    Pam
  • usakat
    usakat Member Posts: 610 Member
    #7
    pamness said:

    Ok, ban me from the boards, don't read my posts, whatever. I am not in favor of selecting "the perfect child." However, if genetic testing was able to tell me that my child had a very strong chance - of developing an incurable disease, or an extremely devastating development disorder, I think I might take the less selfish route and choose to adopt a child that needs a home. This is very different than a test that says - there is a slight possibity. For example - look at Huntington's disease -- the odds are 50/50 with one parent and the outcome is 100 percent fatal - would you take that risk? I wouldn't. Most people with Huntington's die in their late 30's and early 40's in a way that is pretty horrific. That is a gene that needs to be gone from the population. Look also at Lou Gherig's disease, I watched my uncle die from it at 42, they don't have a genetic test for it yet, but I would never willingly subject anyone to that.

    I have a friend with the BRAC1 gene mutation - she, her sister, her mother, her aunt and her grandmother have all had breast cancer. So far only she and her sister have not died from it - they both had prophylactic double masectomies with 3 month follow ups. Neither could have children has they had them done fairly young after the cancer or precancer showed up and they elected to have chemo to prevent any possible recurrence.

    So they will not be adding their genes to the gene pool. I am glad, as are they that they were born, but they have no desire to pass it on.

    This isn't a question of "perfect children" and I find the comparision to Hitler abborant - I am Jewish - it is a question of intelligent choices - no child has to be perfect, but would you deliberately subject a child to a horrible medical future?

    By the way, I am not saying this without experience. Again, I am not advocating for "perfect children" but if you can avoid an almost certain horrific outcome, maybe that is not so bad.


    Pam

    Hello Pam,

    I didn't put up the original post to get comments only from people who agree with my point of view. I started this thread to get an open dialog started about medical ethics and how we as group think and feel about the question of using genetic testing for the purpose of decreasing cancer risks by selecting who shall be born without specific genetic conditions. With that said, thank you for sharing your point of view. Please keep contributing - your participation is appreciated by many.

    First and foremost, I apologize if any of my comments offended you. I loathe to think I would offend anyone here, especially as it relates to a person's faith.

    I looked into the number of known genetic conditions that exist, but unfortunately the information varies quite a lot - the number seems to be between 4000 and 6000, with more being discovered very rapidly as scientists continue with important genetic research. While some of these genetic conditions do not produce diseases that are as devastating as cancer or Huntington's disease, they are nonetheless, troubling and quite devastating to the person who lives with the condition (think about diabetes, sickle cell anemia, arthritis, etc.).

    Most genetic conditions, including HNPCC, FAP and BRAC are autosomal dominant genetic conditions similar to Huntington's, which means that my brothers and I had a 50/50 chance of inheriting the gene mutation. I did inherit the mutation and unfortunately, with an increased risk of nearly 80% of getting colon cancer, I did get it when I was 42 years old. My grandmother died of HNPCC breast cancer at age 46 and six of her seven siblings had HNPCC related cancers. All of them died from their cancers. My mom has had cancer four times and is currently living very healthy and happy.

    Most people with HNPCC are diagnosed with cancer in their forties, many much younger. It's even younger for those with FAP. Sadly, many people with HNPCC and FAP do die young of their cancers. After watching too many of my family members die of cancer, I can say it can be a very devastating and horrific way to die. But so are some automobile accidents, a leading cause of death in the modern world, and I don't see us eradicating cars anytime soon.

    Monica made the comparison of girl children being aborted or abandoned because their culture created a thought that girls are less valuable to society than boys. Nazi eugenics made distinctions of what they deemed more valuable or desirable traits in humans, and therefore supported sterialization and execution for those who didn't have the desired traits. I believe these things truly are abhorrent. Again, I ask the question of what is more valuable or not in a human being and who decides? Does having a genetic condition that might cause disease make a person less entitled to a chance at life? How or who decides what genetic conditions should be eradicated by eugenics or scientific selective breeding and which ones not?

    As I said, I believe using genetic testing for the purpose of selecting children can be a slippery slope. Is it okay to genetically test an embryo or fetus for cancer, but not okay to see if the child will likely have a high IQ? Once that door is open, how wide will it swing? Perhaps the better way to eradicate genetic conditions is to understand why they occur in the first place and perhaps look to solutions for cell repair (gene correction). Perhaps this has a far broader reach than having people decide who should be born or who shouldn't.

    You bring up a very important point - responsible reproduction. We all have the choice to become a parent or not. If a person is fearful of passing on a genetic condition, then perhaps they should not become a birth parent. I'm not convinced that intervening in natural selection is the way to avoid illness. Illness is part of our existence - we are very fragile creatures. A person might be scientifically selected for birth because they are free of a known genetic condition, but then die of heart disease, the leading cause of death in this country.

    In my original post I mentioned the couple who used genetic testing to avoid having children with a high risk of developing cancer, pointing out that simply because they tested their children in this fashion, they could not guarantee that they would indeed have healthy and/or cancer free children. I also pointed out that because a person tests positive doesn't necessarily mean they will get cancer and because they test negative that they won't. While these points are purely anecdotal, seems to me using genetic testing in this manner is flawed and really isn't the answer for reducing the overall rates of cancer or illness.

    I believe the far reaching implications of where and when the line gets drawn and if there truly is a benefit for the greater good is too painfully unknown to venture into these deep waters of medical and scientific ethics. Although, we never know what the future will bring...like Aldous Huxley, we can only imagine.
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • chynabear
    chynabear Member Posts: 481 Member
    #9
    Hi Katie,

    Thank you, thank you, thank you for writing this. It not only brings some very interesting conversations and thoughts, but this is nearly the very reason I have not spoken to my biological half-sister for nearly 3 years. I refused to get the testing plus I didn't want her to feel "safe" that she wouldn't get cancer and stop being screened because either I or she did not have the gene (the whole argument from her and her husband was that i was a horrible person for not doing this and that they have to pay a lot of money for colonoscopies).

    On the same token, I don't want to feel like an imperfect child because I tested positive for the gene. I want to give this some very serious thought before I get the testing.
  • kristasplace
    kristasplace Member Posts: 957 Member
    #10
    This subject has been brought up a lot in the press lately. I think i saw that show. There was a doctor on there who was a proponent of the genetic testing, and added that it would be unethical to use the testing for choosing eye color, intelligence, etc. But like Kate brought up, where does the line get drawn once it's started?

    Did anyone see the show about the little boy whose parents saved the stem cells from his birth, then used them to cure him of cerebral palsy?? Is this considered harvesting? Where will the line be drawn here?? When will we start cloning human beings to have healthy organs if we ever need them? Scary, scary stuff! I agree with Pam: Find natural ways to eradicate genetic mutations. After all, they were caused by something...maybe years of living in a filthy environment, maybe decades of eating unhealthy food?

    I heard that spontaneous gene mutations are rare, so that means it took years to modify the gene to do what it does. It will take years to reverse the damage, but it can be done, and without playing God. But those are just my two cents.

    Many hugs,
    Krista
  • cjf2006
    cjf2006 Member Posts: 83
    #11
    To have oneself tested and to know one has a mutation that could be fatal is one thing. One can make the decision to not have children and adopt. But to know , then conceive in vitro, and then destroy a life that was begun is selfish, arrogant, heartless, and wrong. People are reducing human life to the equivalent of refuse. Garbage. We are such a throw-away society already. Can we throw human life away simply because of the threat of pain and death? Guess what. Everybody dies. To be alive means to die someday. The human race is subject to a 100% mortality rate. I have incurable colon cancer. I am going to die. And it will not be pleasant when I do. So? If my parents had known this, should they have aborted me? Where would all the love have been? the shared joys through our trials? Where would their grandchildren be?

    Human beings, in the name of science and technology, are losing noble character and compassion. Why is it so important to avoid death? What does such an attitude of "throw-away-life-because-it-isn't-perfect" do to the meaning of the sacrifice men and women make as they die for their country in battle. Their death is painful, even horrific. Does it mean so little because it is so awful? Should we avoid pain and death to placate our inner longing for peace and tranquility? Should we all become pacifists and let terrorists reign?

    What if that life that has the potential to develop cancer also has the potential to discover a way to conquer it and thereby help many?

    What if the healthy "perfect" one that was kept was given a set of car keys at 16 and ended up in a carwreck that was fatal. Did having a better gene configuration save it from pain and death?

    Disposing of human life, because it is flawed, or inconvenient, means we are too weak and shallow to place a value on it. Haven't you noticed that those who suffer much in life often have greater character? They have much to offer us and to challenge us with as they rise above their situation and carry on, even achieving amazing things in the process.

    Eugenics, euthanasia, abortion are symptoms of a greater disease that is destroying human society. The disease is like cancer, in that it grows abundantly and overwhelms the healthy body, and ultimately brings death. I fear our society is heading down a self-destructive path. When we no longer value human life, when our hearts are stone cold, we will destroy ourselves and each other. Take a look around. It's happening already. Greed. Lust. Murder. Vindictiveness. Drug abuse. Violence. Weapons of mass destruction. Terrorism. Etc. Just step out your door or get in your car. It's a dangerous world out there.
  • usakat
    usakat Member Posts: 610 Member
    #12
    I appreciate the comments from everyone who has participated in this discussion thus far - it's quite interesting and is giving me much food for thought.

    One thing I was concerned about when I started my original post, is the potential that the discussion could lead towards an argument about reproductive rights (the abortion debate). The nature of the discussion and the questions that arise do co-mingle with the pro or anti abortion philosophies, and while I do respect and support each and everyone's right to their opinions on such matters, the point of the post was to talk about the uses of genetic testing and what the results of those choices would bring to us as individuals and to us as a society.

    My genetic counselor mentioned to me that there are two purposes of undergoing genetic testing - diagnostic and predictive. For me as a cancer patient with a tumor that via micosatellite instability testing suggested my cancer was genetic, I chose to confirm it via genetic testing. In my case it was for diagnostic purposes. The test would allow me and my doctors to gain information about my specific cancer, aid in establishing treatment plans, give me more options and choices for future health decisions, and inform my family of the familial cancer risk.

    Since I, and subsequently my mom, tested positive for the HNPCC gene mutation it suggested a probability for the rest of my family that they too could have the same mutation. Since my family members were asymptomatic (no symptoms) of any disease at the time of their tests, their tests were considered predictive.

    Predictive genetic testing can tell a person if their risk for a specific genetic condition is higher than that of the general population. For people with the HNPCC gene mutation the risk for colon cancer soars from about 6% for the general population to 80%. So there are benefits for individuals to know if they are indeed in this high risk population. The question is, then what do these individuals do with that information?

    The choice of whether a person should undergo testing or not is highly personal. Each person must draw their own conclusions about the benefits of knowing or not knowing, especially as it relates to children. Predictive testing for children with certain genetic conditions can provide benefits for some children, however in many cases it is not clearly beneficial and those kids should be allowed to make their own choices.

    For years, many people were concerned about insurance discrimination as it related to genetic test results, but in May a new bill was signed into law by President Bush, HR 493: Genetic Information Nondiscrimination Act, which prohibits discriminatory practices of insurance companies and employers based upon genetic information - genetic test results. While this is certainly a step in the right direction, and although I'm immensely grateful that my congressional representatives supported the bill, it still doesn't quell all of my apprehensions about genetic testing entirely.

    One of my apprehensions has been the question of how genetic testing will be used in the future, which was fully brought to the surface yesterday when I heard about the testing of embryos for cancer. As I mentioned in my post above, I don't see the benefit of genetic testing of embryos to avoid or diminish the risk for cancer. Since predictive genetic testing is just that - predictive - I don't see how genetic testing would have a net positive result in eradicating cancer as a whole, even in specific high risk families like mine.

    Further, I fear that using genetic testing in this manner could influence society's views about people with genetic conditions and quite possibly generate movement towards dangerous choices about reproduction options. Moreover, when people or society accepts certain options, at what point does the government or big business get involved and start legislating or pricing us toward one choice or another (see Huxley's Brave New World)?

    So, does this make me a pessimist, paranoid, cynical like Babs asked? Maybe....although, it's sometimes very hard to tell what tiny little thing will actually tip a society in a positive or a negative direction. Think about the discovery and uses of nuclear fusion....

    "The vast possibilities of our great future will become realities only if we make ourselves responsible for that future." Gifford Pinchot
  • usakat
    usakat Member Posts: 610 Member
    #13
    Here is a link to the Today Show feature that inspired my original post...
    http://www.msnbc.msn.com/id/25455982/

    Check it out!
  • usakat
    usakat Member Posts: 610 Member
    #14
    unknown said:

    This comment has been removed by the Moderator

    Hi Babs,

    It's nice to know I'm not alone in being uncomfortable, and honestly, scared of this notion of "making" babies. I believe this is a very slippery slope.

    Who decides what is a perfect child? And where does it stop and who decides the limitations? And projecting far into the future, what will the world look like?

    I agree with your comparative reference to Huxley...

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