I just read that a new study is finally allowing surrogate consent for Alzheimer’s patients. Having been in the situation as care-giver for a parent with Alzheimer’s, I say about time. I find it appalling that this “surrogate” consent was not allowed earlier. As if research for Alzheimer’s needed any more stalling. How can we advance in research for Alzheimer’s and dementia, if studies are not done on patients suffering from these diseases in their varying stages? For instance, when my father was diagnosed with Alzheimer’s, he was immediately prescribed Aricept. However, because of his rapid advancing stages, the Aricept was not beneficial for him, and no other drugs were available to help or slow down his dementia. According to the article:
“By the time they (patients) have been diagnosed with Alzheimer’s disease, many patients’ decision-making ability is so impaired that they cannot give informed consent to participate in research studies. Close family members are left with the decision, but there is no clear policy for this so-called “surrogate” consent. Because of that, research about the increasingly common disease is often stalled. But a new study led by the University of Michigan Health System suggests that older Americans are very supportive of family surrogate-based research, and would support having their family members enroll them in research in case of future incapacity. The study appears in the new issue of the journal Neurology.”
Although the article notes that, “ethnic and racial minority groups were slightly less willing to participate in surrogate-based research,” there has been support from these groups. I know that I am a strong supporter of Alzheimer’s research and the concept of surrogate consent. I only hope that this decision was made 4 years earlier, when my father would have been able to benefit. The article mentions that, “The rates of Alzheimer’s disease are rising rapidly; in 2000, there were 4.5 million Americans with the incurable disease, and by 2050, this number is projected to be 12.5 million if no effective treatments are found.” Although my Dad will not be one of the lucky ones to benefit from this new decision, I’m happy that millions of others will. Who knows, this research may even help me one day, or one of my siblings.
Subscribe to:
Post Comments (Atom)
2 comments:
Surrogate based consent for research is a very serious topic that unfortunately could lead to abuse and loss of human rights. I think the better alternative would be a “living surrogate will” where a lucid person can write his or her will stating that if in the future his or her mental capacity is deemed legally impaired, then he/she would give specific surrogates the right to enter him/her into clinical trials.
I myself would never consent to give anyone this right in my “living surrogate will”. The scientific community has shown too many integrity problems related to past clinical trials which makes me shudder in disgust. Take a look at the history of gene therapy. Take a look at the problems with clinical study consent forms. The scientific community does not even support their own worker’s basic rights of freedom of speech regarding public health and safety concerns and does not support providing them exposure records for their healthcare. The scientific community has a major integrity flaw. I would be apprehensive to enter into any clinical trial at this point under any conditions.
If you are desperate and feel that entering into a clinical trial is your only hope or hope for a relative, be prepared to be a guinea pig at best. Because that is basically what you are to the scientific community. If that is alright with you, it is your choice. But not mine. I do not support laws giving surrogate based consent for clinical trials to anyone without prior consent.
I agree that there is much to despise in the realm of clinical trials. However, in the case of Alzheimer's disease and in the absence of legalized euthanasia, I would vote in favor of surrogate-approved research under strict ethical controls. As a nurse, I worked intimately with Alzheimer's patients and I can attest to the slow, painful, and extremely expensive heartbreak of this demoralizing, humiliating, and debilitating illness. Surrogate-consented Alzheimer's research could finally give meaning to lives that have been destroyed in such a cruel fashion. Patients' families could find some consolation in knowing that their loved ones were contributing to a better future for others and perhaps even their own. It would be ideal to create a living surrogate will in the event of an Alzheimer's diagnosis but I wonder how many people would have the information or the foresight to do so. That is why surrogate consent is such an important concept.
Post a Comment