Human Genome/Genetic Counseling

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Iceman

Iceman

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Recently, I have been given an assignment to discuss the moral and scientific pros and cons of human genome research and genetic counseling (basically predicting whether two parents will pass a disease on to their children based upon their DNA map). I'd like to hear any take you guys have on the subject, and resources and citations would be greatly appreciated. Some of the moral aspects of this counseling that may be controversial in the very near future and somewhat even at this time include situations in which a developing baby would be able to be diagnosed with certain genetic disorders and could be then aborted based upon findings (I am in no way advocating this, just stating the fact). In other cases, parents might be able to choose not to have children when there is a high possibility of a disorder, obviously not a bad thing, but it does raise issues of whether we are playing with our destiny. Any thoughts would be greatly appreciated. 👍
 
My sister is planning on becoming a genetic counsellor.

My thought on it is that it's kind of good to know what's common in your family history. Take my family for example. 3 of my aunts from my mom's side of the family have had breast cancer. SEVERAL of my relatives from both sides of the family have diabetes - even my dad was diagnosed with it last year. My cousin's daughter has had it since she was only a few years old. Her case is so bad that the doctors had to implant computers into her body to monitor her sugar levels. There's heart problems galore - several of my uncles have had heart attacks and my dad has also had one like 10 or so years ago. A couple of my cousins have thyroid problems. Now my mom even has a very bad case of arthritis in her shoulder and neck - it's so bad that it resulted in several nerves in her neck and arm being pinched. She was almost unable to move her head or arm and she was on extremely heavy pain killers for nearly 3 months while that healed

So yea, it should be a good idea to know what you have in your history so you can at least do what you can to prevent it. Since diabetes runs rampant in my family, it's a good idea to keep a decent diet so as to not cause the problem to come sooner or to even prevent it from coming at all.

On the other hand, there will be some people out there who will take the advice and knowledge provided by the counsellors and assume that they're guaranteed to have these genetic diseases come to them. There will be others still who take offense in it by thinking it's just putting people one step closer to "playing god." If people know what's going to come, they may outright refuse to have children.

Still, there's another arguement that if/when human genetic modification becomes available, it will be possible to fix these genetic defects in the fetus so that the child ends up not having any risk of them. People will also, as iceman said, attempt to abort their children based on potential genetic disorders. Don't forget that for everyone supporting this, there will be another person against it for the whole "playing god" arguement. There will also be people out there who will want to genetically modify their children to appear the way they want them to. So in a sense, it would be like pre-conception cosmetic surgery

Personally, I'm undecided. While I like the idea of genetic counselling and modification to fix genetic disorders and to at least be aware of what is in the family gene pool, I'm completely against the thought of people using this to determine the physical whatever other genetic features the child they will have.
 
You bring up a good point at the end emad, that genetic modification could be used to give a child certain traits, such as blue eyes, and most likely it would go even further until it became somethin like plastic surgery, in which someone could change themselves, or in this case the parents, could change the child before it is even born to their liking.
 
I wonder if genetic modification in this way would be a hinderance or improvement on human evolution. Take change one gene here and you may later on become prone to something else... or changing certain genes would enhance certain characteristics which would then be carried down to future generations.

I have a feeling that the religious groups will have a lot to say on the topic of genetics. They already said enough and have convinced governments to not support stem cell research despite how important it is to learn more about this for many aspects of medicine
 
Danoff
http://www.cnn.com/2007/HEALTH/01/18/genetic.testing/index.html

Interesting article... genetic discrimination? Sounds like Gattaca to me.

What do you think? Should laws exist to prevent health insurance companies or employers from discriminating based on genetics?
Click to expand...

Yeah, there's a question. How about: "Your parents knew there was a risk of your particular defect, and had the means and opportunity to prevent it. Therefore coverage is denied!"

Browsing a bookstore this morning I came across Crichton's new book, Next, which sounds like it's sort of along these lines.
 
I used to work for a life assurance company and as such I was introduced (albeit obliquely) to the world of the insurance underwriter (a shady world of intrigue, mystery, corruption and.... no wait, that's espionage)... anyway, I've always found the whole business to be borderline unethical, but at the same time, it is the private sector and they aren't under any obligation (moral or otherwise) to cover you or even offer you decent premiums if they assess you to be at higher mortal risk than someone else... But I think a happy solution to this problem would be to make insurance companies pay to have access to your genetic information... but ultimately, your genetic information is not unlike any other private and highly personal information that insurance underwriters might ask of you anyway...

A couple of examples: Married couple apply for a mortgage protection policy, both with clean medical histories and both employed. Underwriters' decision: Pass - normal premiums. Two unmarried men, unrelated and both employed, arrange for a mortgage protection policy together. Underwriters' decision: Pass on condition of completing the (infamous) Lifestyle Questionnaire, which asks such questions as "Are you gay?", "Have you ever been an IV drug user?" etc. (or, in the case of depression sufferers and alcohol/drug users, a Suicide Risk Questionnaire sent to their GP) If any answers on the LQ or SRQ are positive, they will either be declined completely (i.e. a former heroin addict, someone who has a history of suicide attempts, or a very serious medical condition etc.), or given a policy with higher premiums... seems a little 'discriminatory', but that is the nature of the risk assessment business... Therefore, I wouldn't say it should be illegal to use genetic information per se, but there should be definite guidelines as to how the risk is fairly assessed/applied and premium rates should reflect that.
 
Danoff
What do you think? Should laws exist to prevent health insurance companies or employers from discriminating based on genetics?
Click to expand...
It is like any other part of my medical history that they have access to. Of course, I think I should have to give them permission to see this information, but they can choose to do with it as they please after that. If an insurance company weren't allowed to charge different rates or even deny coverage based on your medical history they could all go bankrupt as people just diagnosed with cancer (as an example) could come in and sign up. As someone with a congenital heart defect I constantly worry about employers and/or insurance discriminating against me, but I would be willing to pay the difference if they asked. My biggest fear would be getting denied a job because of something I couldn't help, but it is their business.

My mother and I disagree on how I should handle the situation of looking for jobs. She is of the opinion I should hide any sign of it until I have the job and am secured in my position. I have two issues with this: 1) I would be being dishonest, especially since applications ask if I have any physical limitations. I can't do heavy lifting or work outdoors due to the stress. 2) I can't find a job with the benefits I need if I don't ask. No one hands you the benefits booklet in the interview or application process, unless you ask. Taking a job will be pointless unless it has healthcare benefits (or the salary to pay for them) that will cover my needs. I can't afford bills in the tens of thousands of dollars every few years.

So, I basically list my medical condition on the application if they ask about physical limitations and then in the interview I ask about their healthcare benefits when they ask if I have any questions. I will take small pay with decent healthcare over a high paying job with none.


Now, if I ran an insurance company I would pay for potential parents to have the genetic testing done and the genetic correction. It would total ~$30,000 to ensure they have a healthy baby. Parents who do this would receive our lowest cost for covering a child, as they are the lowest liability. Parents with no history that refuse testing get a low-medium cost to cover their child. Parents with a history, but refuse a test get a medium-high cost to cover a child. The parents that test and the child will be prone, but refuse alteration get the highest cost.

I would grandfather in any children already born or conceived before the new rules under the old rules, but all future children must meet the new standards.

Then I would definitely advertise this fact. We are the company that will pay to help you guarantee a healthy child. For that we will give you discounts until that child becomes independent and then they will receive discounts as adults from us as well.

For $30,000 you are essentially setting up a low liability, lifetime customer.
 

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