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    Posted June 8, 2014 by
    Ethicist1
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    The benefits of confidentially knowing a person's high-risk gene for Alzheimer’s Disease in persons 55 years of age or less at an affordable price

     

    It has been over a decade since the human genome was entirely sequenced at a cost of 3 billion dollars to the tax payers and the information that was gained has enhanced our understanding of some individual human genes. The promise of all the incurable genetic diseases that were supposed to have become curable has yet to be within reach in the near future. But the predictive value of the genetic information from an individual that can become available from knowing the sequence of some of the genes that predisposes them to a particular deadly disease is quite astonishing. One such gene is the gene that encodes for a protein called apolipoprotein or ApoE. This protein transports lipids like cholesterol and is produced in liver and certain brain cells called astrocytes. Every individual has a pair of alternate forms (referred to as alleles) of the Apo gene. There are 3 possible alleles, that an individual could have Apo e2, Apo e3 and Apo e4 and an individual can be homozygous with 2 similar alleles (eg Apo e4, Apo e4) or heterozygous with one allele being of one type and the other being of an other type (Apo e3 and Apo e4). About 14% of the US population roughly 42 million individuals have the Apo e4 allele. Globally the proportion of the population with the apo E4 allele is not very different and would mean that close to a billion people around the world are predisposed to Alzheimer’s Disease (AD) and cardiovascular disease in their senior years. There is about 3 times greater risk in individuals with heterozygous or single Apo e4 allele and a 15 times greater risk, almost a near certainty that an individual that is homozygous for the Apo e4 allele will have AD. Baby boomers constitute roughly 70 million of the US population and out which approximately 10-12 million could potentially develop AD. In addition, the risk rises further if the person with Apo e4, has had a history of head trauma injury. There is currently no known cure for late stage AD, when dementia and loss of memory has set in. Earlier in this week, the 5th International ApoE Symposium sponsored by the National Institute of Aging, an Institute of the National Institutes of Health was concluded in Lexington, KY with an intense debate, on whether every 55+ person, could benefit from knowing their inheritance of apo E allele. Those who were against such an idea that was proposed had one major single point of contention and that is, what good will it do if there is no cure or a treatment, the minor point was concerns regarding confidentiality and consequences should information of being carrier of the risky allele getting out. Although, individuals carrying the Apo e4 allele have not been known for their longevity, it does not mean that dementia or death is eminent in the person’s near future. My response to those who are opposed to my idea is that there may not be a cure and the treatment in later stages may be futile but understanding the risks earlier on may provide a multifaceted window of opportunity to slow down or even prevent the loss of memory associated with a person disposed to AD. What then is this window of opportunity? It will give the person seek counseling on what things in life will require an urgency of now in terms of significantly increasing physical activity, maintaining a normal lipid profile, reducing weight to ideal body mass index, maintaining balanced nutrition with abundance of antioxidants such as but not restricted to cocoa, pomegranate, curcumin, fruits, fish oil, vegetables etc. In addition, the person who is Apo e4 carrier can plan his or her future while the person is of sound mind and able to prepare a living will and a last will, organize finances, organize household articles etc. Knowing the ApoE allele status will allow a person carrying the risky allele to participate in any of the many global clinical trials from which they may derive the benefit of postponing the likely loss of memory and the costly care that will be needed. There is always a benefit in having an early diagnosis of existing and future age related health problems as early in life as possible. As an unrelated example, in the absence of an early diagnosis, I found out the hard way, what I found out, after going through much of my life rushing to the toilet, I wish I had known in the early days, that I am lactose intolerant. It could have saved me thousands of rushed trips to the toilet, which in some places around the world can be difficult to find. There is a simple solution to my problem once it was diagnosed and that is staying off lactose containing foods or taking lactase supplements but being unaware was not very helpful in getting through life. An expected question from a participant of the ApoE symposium was how much will it cost to determine the Apo e allele that has been inherited and who will pay for it? Not surprisingly that was a question from the Director of Global Science Initiatives of the Alzheimer Association. My answer to that was, it is currently around $100 and one gets a wealth of information in addition to the allele status for AD. Who pays? My answer is at least initially a concerned person, especially if there is a family history of AD. Why not Obamacare or private insurance? My response, confidentiality may not be assured if one goes through a system where files are maintained and my final my response is health insurance does not always equate healthcare, so ask not what the country can do for your healthcare, ask what you can do for your own care. Every American should remain aware of what could happen if one looses their mind and take steps to prevent it or fight it off while staying prepared to deal with it if AD does strike. As a nation, we could potentially save an estimated trillion dollar annual cost for caring for AD patients 2020 onwards by kicking the can further and kicking the bucket much later in life and alleviate suffering of epic proportions.

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