Possible ethical implications of beta-amyloid testing
Recent reports and long-term studies have been conducted to look at a link between the beta-amyloid protein and onset of Alzheimer's disease and dementia. An example article can be found in the link below:
http://www.medscape.org/viewarticle/761325
As people are living longer, the incidence rates for AD and other dementias are increasing, posing not only a strain on family relationships, but also an economic burden due to rising medical and residential care costs.
Additionally, many setbacks have been occurring in the development of new drugs used to successfully treat AD/dementia with many companies experiencing delays or incongruous results. Roche is currently working on increasing their clinical trials for a new drug.
Now, advances toward a reliable blood test for beta-amyloid protein are being made. The goal is to (possibly) routinely check serum beta-amyloid levels earlier in life in order to initiate earlier treatment...long before the initial signs of AD, similar to checking cholesterol levels for possible heart risks.
http://www.medscape.org/viewarticle/761325
As people are living longer, the incidence rates for AD and other dementias are increasing, posing not only a strain on family relationships, but also an economic burden due to rising medical and residential care costs.
Additionally, many setbacks have been occurring in the development of new drugs used to successfully treat AD/dementia with many companies experiencing delays or incongruous results. Roche is currently working on increasing their clinical trials for a new drug.
- Knowing that at this time a reliable drug used to proactively combat AD/dementia has not been approved by the FDA, would you want to undergo the blood test for beta-amyloid protein? Why or why not?
- Would you agree to undergo such routine blood testing in order to take place in a long-term clinical study on how drugs could (possibly) delay, if not eliminate, the onset of AD/dementia? Why or why not?
- If such a drug did exist, would you then undergo the routine blood testing? Why or why not?
1. I would not want to undergo a blood test beta-amyloid protein because of the Food, Drug, and Cosmetic Act of 1938. This act and various others was the bases for the FDA approval in order to keep us safe. I read/learned of the history of testing on black people in America and I dont want to take a chance. From Betsy to the Tuskegee syhillus experiment, I found that my life is precious to me as well.
ReplyDelete2. I would not agree to undergo a routine blood testing in order to take place in a long-term clinical study because although countless benefited from Betsey's pain by Gynecologist Sims, she still ended up "messed up". Her experience made me very critical of experimentation on black female bodies.
3. If the drug existed and it was publicly known/verified and approved by the FDA, I would undergo routine blood testing because I value my life. I know it sounds selfish, but if I could better my health, I probably would choose to do so. I would just not want to be the guinea pig because of what happened to Betsy. (from Medical apartheid : the dark history of medical experimentation on black Americans from colonial times to the present
by Washington, Harriet A . ( you can check it out from our library))
Interesting. This is very well thought out. I haven't read that book; I wish I could have the time to peruse it this semester, but I will try to read it in the future.
DeleteIt is fine with me if you want to remain anonymous or use a moniker (such as "in love with God"), but please email me personally who you are if you would like to get the extra credit; otherwise, I do not know should be accredited.
Good job!
:) its me Rose.
Delete1. If I had the choice of being tested for the beta amyloid protein without the possibility of an FDA approved drug to combat the disease I would forgo the testing. In my opinion, one of the main reasons an individual is tested for ANY illness is with the intention of treating it. If I were to be tested and the results came back positive, then what? Life would be extremely difficult knowing that I have a serious illness for which drugs are unavailable. What an unfortunate way to go about life. I think I'd rather not know and just live life to the fullest for as long as I could. Grant it, it is virtually impossible to say with 100% certainty what I would do unless I was realistically forced to make a potentially life altering decision.
ReplyDelete2. The first two questions that would immediately come to mind are: How long would the trial be and what would be the potential adverse affects? If the trial is extremely long and drawn out as well as very invasive I would probably decline. The thought of spending time away from my family and spending countless hours being probed and examined just doesn't sit well with me. I would rather use the little bit of time the Lord has blessed me with to nurture my personal relationships... not be used as a scientific Guinea Pig.
3. If a drug did exist to combat AD I would most likely consider undergoing the routine tests. The idea that there is something out there that could slow the progression of such a vicious disease would bring me comfort.
1. I personally would not feel comfortable using a drug that has never been tested before. What if the drug had adverse effects and started Alzheimer’s early one me? Also, I’m not sure I’d want to know if I was going to have Alzheimer’s. I feel like I’d be anticipating my deteriorating brain for the rest of my healthy life.
ReplyDelete2. I’m not sure I’d be comfortable going through with life-long testing either. Thinking about what was to come in the future all the time would frustrate me. I wouldn’t want to consistently think about it or be put to the test with it forever. However, at the same time, it would be kind of cool to be part of testing to find out how to get rid of this horrible disease.
3. If a drug was FDA approved, I feel like I would be more prone to accepting the drug and figuring out through blood tests if I was going to have Alzheimer’s or not. It would be nice to have an approved drug to delay or stop the brain deterioration before it even happened.
1. Even though there has not been a drug approved by the FDA, that doesn’t mean there isn’t a homeopathic way to combat AD/dementia. If this disease was prevalent in my family then, yes, I would undergo the blood test. It is important to know what is going on in your body. Test results do not determine how your life will turn out, but I think it is beneficial to know what possible illnesses may arise in the future. This will allow for preventive measures to be taken.
ReplyDelete2. No, I would not agree to the routine blood testing for a clinical trial. It seems very time consuming and invasive. There would be no way to know what side effects to expect from the drug being tested. This seems to be a counterproductive approach.
3. If a drug did exist, then I would consider undergoing the routine blood testing. If the drug would increase the quality of life, the next step would be to weigh out the pros and cons of the predicted side effects. This would help in making a final decision of whether or not to use the drug.
1. Yes I would want to undergo the blood test that checks the presence of beta-amyloid protein. Alzheimer’s disease and dementia are serious diseases that need to be treated. I feel that taking a blood test isn’t harmful and that there should be multiple contributions to a simple blood test that is working in your favor. This blood test could be the solution to long term studies that can terminate the problem that you are dealing with. Personally, finding things out and immediately looking for a resolution has always been my thought process.
ReplyDelete2. No I would not agree with long term testing and drug research on a drug that has yet to be approved. If I am already dealing with a serious disease I would not want to add more problems to my body by taking a drug that I don’t know effects off. This drug could potentially be more harmful than helpful. I think that spending time experimenting with a drug is useless and dangerous.
3. I would undergo routine blood testing to help researchers get more info however I would not take any drugs that have not been approved by the FDA. I feel that a blood test would not be as harmful as a drug that is only a possibility. Additionally, I would not add problems to my body when I’m already dealing with something else. I would only take this drug if it was a guarantee that it would affect the cause in some way, rather that affect be a delay or elimination.
1. No, I would not want to undergo a blood test for beta-amyloid protein for two reasons. First, I would never agree to the use of a drug that has not been approved by the FDA unless I was terminally ill or permanently paralyzed with no possible cure; in this case, I have nothing to lose. The FDA exists for a reason: for protecting public health. If the drug has not been approved by the FDA, then it means that it is most likely not safe for public use. Drugs that have not been approved by the FDA could have adverse side effects, and the way I see it is that it is better to be safe than sorry. Secondly, why bother with the test if there is no reliable, FDA approved drug available? To live with the fact that I might get AD or dementia and not be able to do a thing about it? Absolutely not. It adds unnecessary stress, and it would just end up being a waste of time and money.
ReplyDelete2. This is assuming I have a high chance of developing AD/dementia? If it’s not FDA approved, then I want no part of it. It’s like I said, I don’t know what type of adverse effects the drugs could have on me. The only time I would use any type of drug that has not been tested is if I knew for 100% that I would die soon. I know it sounds selfish, but I’d rather avoid drugs that could harm me and believe in the healing power of God. Thankfully, God has placed people on earth that are willing to go through such tests and endure the side effects for the sake of others. Some people have the capability to cope through certain things better than others. In addition, I do not feel I would enjoy having to undergo a blood test routinely for the rest of my life as part of a clinical trial. It would just remind me that I could/would eventually get AD/dementia.
3. If such a drug did exist, possessed no possible, harmful side effects, was FDA approved, and the possibility of developing AD/dementia for me was very high, then yes I would undergo routine blood testing. I have nothing to lose, and it is for the betterment of my life. In addition, I’d be able to put up with the fact that I could develop AD/dementia because there would now be a cure/treatment.
1. After really thinking about this question, I would have to say that I would not go through routine blood testing unless my family history would suggest that I could possibly develop AD/dementia at a certain age OR I displayed some strong symptoms of AD/dementia. If I was discovered to have the beta-amyloid protein, although it may not be cured but early detection would allow me to do whatever I can to set up the best medical care for myself for the future.
ReplyDelete2. No, I would not want to undergo any testing for long-term clinical studies because although it would be for a great cause of finding a medicine for AD/dementia, the complications that could develop from the known and unknown side effects from long term exposure to the different experimental medications and varying dosages would make me not want to be involved.
3. If it was approved by the FDA and has been proven to be effective over a long period of time with large numbers of people then I could possibly undergo routine blood testing but if the degree/severity of the side effects is quite high, then I wouldn't do it.
Of course, if no one volunteers for clinical testing, how would any drugs be FDA-approved and make it to the marketplace?
ReplyDelete1. Yes, so that I could do different types of prevention such as mind exercises and different diets if I was at risk of developing AD. However, now there is a very reliable blood test to determine if you are going to develop AD. This test can reveal with 90% accuracy if someone will develop dementia or AD within 2-3 years. It works by detecting ten different lipid biomarkers in the blood.
ReplyDeletehttp://www.nature.com/nm/journal/vaop/ncurrent/full/nm.3466.html
2. I would participate in the clinical study to help advance science and in the hope that my contribution would someday help save lives. Also, it would be a bonus if these routine blood tests revealed I had a different disease that I never would have caught in time otherwise.
3. I would participate in the clinical trial if I did not have to take the experimental drug. Experimental drugs in clinical trials are capable of accelerating diseases or causing other serious detrimental side effects. I would not feel comfortable with making that gamble with my own life.
It's so interesting to look at this article and contrast it with several journal articles we analysed in our Neurochemistry class. There is a great increase on what was known then and what is understood about AD/Dementia now, especially regarding beta-amyloid plaques.
ReplyDelete1. After thinking about this for a while, I would say, I would only agree to undergo blood testing in such conditions as a way to prevent or postpone the onset. But, as mentioned previously, there are biomarkers available that could easily and more reliably detect your propensity of getting AD.
2. I would participate in a long-term study with the condition of having available to me all the studies being done in that specific drug before starting such trial. I think prevention and research are important but not at a cost of a healthy life.
3. yes, after it became FDA approved, not before hand. Even though experimental drugs are somewhat reliable to the point they make it through human clinical trials, they are not 100% save. Many drugs go through several phases of trials in different specimens before making it through human experimentation, but again, this is not mutation-disease-free.
Others would argue and strongly advocate in-Human-first trials, which I do not agree with. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2692671/)
I think this could quite possibly be a controversial topic because it is very similar to the topic pertaining to a baby in the womb and testing the mom to see if the baby has any problems. I think that some people may be okay with the natural aging process, but on the other hand if they can stop AD or dementia by taking precautionary measures I honestly think people would do that. In my opinion I would most definitely do the routine blood tests and become part of the clinical study. I think it is up to the patient and the family of the patient to discuss these options. Whether they should just continue with the natural aging process or help further treatments for AD and participate in a clinical study.
ReplyDeleteI think it is a fantastic idea to test for such debilitating diseases before the symptoms kill the patient. My grandpa died from AD and so did another member on his mother's side. Because of that my mom is paranoid that she has will get it. I think testing for AD would be a great way to put people such as my mother's minds at ease. I would still want to thoroughly investigate the procedure however, so I could make sure it was morally and ethically right.
ReplyDeleteSome people say ignorance is bliss, and for a situation like this, I think I would have to agree. I feel it would be rather depressing to know that you are most likely going to suffer from AD/dementia due to beta-amyloid in your blood. Since there is no known FDA approved drug to treat such an illness, I feel like it would be pure torture to just walk around knowing that you have this condition and do nothing about it. So I would prefer to not have my blood tested.
ReplyDeleteHowever, if there were clinical trials occurring to discover a cure or possible medication to prevent this disease from developing, then for sure I would allow my blood to be tested. Instead of walking around defeated, I would be part of a solution to this large problem. Also, it would really be cool to be apart of a clinical trial.
Additionally, if a medication did exist that could (possibly) delay, if not eliminate the onset of AD/dementia, I would still allow my blood to be tested in order to ensure the effectiveness of the drug against this disease. Through the routine testing of my blood, researchers may discover something that could be improved in the medication that would lead to a better response of the drug. Thus, I could benefit people that are to come after me and therefore make a contribution to society.
Regarding the ethical aspect of what this post puts forth, I believe the patient has the choice to decide whether he/she should get the blood test done. If an individual has directly-linked family/ancestors who have suffered from Alzheimer’s, then such a test may be beneficial. Although there may not be a currently approved drug for the condition, the individual may choose to partake in the test trials associated to developing a medication. Personally, I am not sure if I would go forth with such trials, but there are people who will most likely chose to do all that they can to live without said condition, especially since they will lose grip on their self/identity.
ReplyDelete