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Our opinion on ... - Executive Summary - Necessity for a response - Genetic testing - General principles - Other considerations The present paper constitutes the input of Alzheimer Europe and its member organisations to the ongoing discussions within Europe about genetic testing (in the context of Alzheimer's disease and |
other forms of dementia). Alzheimer Europe would like to recall some general principles which guide this present response: - Having a gene associated with Alzheimer's disease or another form of dementia does not mean that a person has the disease. - People who have a gene linked to Alzheimer's disease |
or another form of dementia have the same rights as anyone else. - Genetic testing does not only affect the person taking the test. It may also reveal information about other relatives who might not want to know. - No genetic test is 100% accurate. - The extent to which |
health cover is provided to citizens by the State social security system and/or privately contracted by individuals differs from one country to the next. On the basis of these principles, Alzheimer Europe has developed the following position with regard to genetic testing: - Alzheimer Europe firmly believes that the use |
and/or possession of genetic information by insurance companies should be prohibited. - Alzheimer Europe strongly supports research into the genetic factors linked to dementia which might further our understanding of the cause and development of the disease and possibly contribute to future treatment. - Based on its current information, Alzheimer |
Europe does not encourage the use of any genetic test for dementia UNLESS such test has a high and proven success rate either in assessing the risk of developing the disease (or not as the case may be) or in detecting the existence of it in a particular individual. - |
Alzheimer Europe requests further information on the accuracy, reliability and predictive value of any genetic tests for dementia. - Genetic testing should always be accompanied by adequate pre- and post-test counselling. - Anonymous testing should be possible so that individuals can ensure that such information does not remain in their |
medical files against their will. It is extremely important for people with dementia to be diagnosed as soon as possible. In the case of Alzheimer’s disease, an early diagnosis may enable the person concerned to benefit from medication, which treats the global symptoms of the disease and is most effective |
in the early to mid stages of the disease. Most forms of dementia involve the gradual deterioration of mental faculties (e.g. memory, language and thinking etc.) but in the early stages, it is still possible for the person affected to make decisions concerning his/her finances and care etc. – hence |
the importance of an early diagnosis. If it were possible to detect dementia before the first symptoms became obvious, this would give people a greater opportunity to make informed decisions about their future lives. This is one of the potential benefits of genetic testing. On the other hand, such information |
could clearly be used in ways which would be contrary to their personal interests, perhaps resulting in employment discrimination, loss of opportunities, stigmatisation, increased health insurance costs or even loss of health insurance to name but a few examples. The present discussion paper outlines some of the recommendations of Alzheimer |
Europe and its member organisations and raises a few points which deserve further clarification and discussion. The necessity for a response by Alzheimer Europe In the last few years, the issue of genetic testing has been increasingly debated. In certain European countries there are already companies offering such tests. Unfortunately, |
the general public do not always fully understand what the results of such tests imply and there are no regulations governing how they are carried out i.e. what kind of information people receive, how the results are presented, whether there is any kind of counselling afterwards and the issue of |
confidentiality etc. In order to provide information to people with dementia and other people interesting in knowing about their own state of health and in order to protect them from the unscrupulous use of the results of genetic tests, Alzheimer Europe has developed the present Position Paper. These general principles |
as well as the Convention of Human Rights and Biomedicine and the Universal Declaration on the Human Genome and Human Rights dictate Alzheimer Europe’s position with regard to genetic testing. Alzheimer Europe would like to draw a distinction between tests which detect existing Alzheimer's disease and tests which assess the |
risk of developing dementia Alzheimer's disease at some time in the future: - Diagnostic testing : Familial early onset Alzheimer’s disease (FAD) is associated with 3 genes. These are the amyloid precursor protein (APP), presenilin-1 and presenilin-2. These genetic mutations can be detected by genetic testing. However, it is important |
to note that the test only relates to those people with FAD (i.e. about 1% of all people with Alzheimer’s disease). In the extremely limited number of families with this dominant genetic disorder, family members inherit from one of their parents the part of the DNA (the genetic make-up), which |
causes the disease. On average, half the children of an affected parent will develop the disease. For those who do, the age of onset tends to be relatively low, usually between 35 and 60. - Assessment for risk testing : Whether or not members of one’s family have Alzheimer’s disease, |
everyone risks developing the disease at some time. However, it is now known that there is a gene, which can affect this risk. This gene is found on chromosome 19 and it is responsible for the production of a protein called apolipoprotein E (ApoE). There are three main types of |
this protein, one of which (ApoE4), although uncommon, makes it more likely that Alzheimer’s disease will occur. However, it does not cause the disease, but merely increases the likelihood. For example, a person of 50, would have a 2 in 1,000 chance of developing Alzheimer’s disease instead of the usual |
1 in 1,000, but might never actually develop it. Only 50% of people with Alzheimer’s disease have ApoE4 and not everyone with ApoE4 suffers from it. There is no way to accurately predict whether a particular person will develop the disease. It is possible to test for the ApoE4 gene |
mentioned above, but strictly speaking such a test does not predict whether a particular person will develop Alzheimer’s disease or not. It merely indicates that he or she is at greater risk. There are in fact people who have had the ApoE4 gene, lived well into old age and never |
developed Alzheimer’s disease, just as there are people who did not have ApoE4, who did develop the disease. Therefore taking such a test carries the risk of unduly alarming or comforting somebody. Alzheimer Europe agrees with diagnostic genetic testing provided that pre- and post-test counselling is provided, including a full |
discussion of the implications of the test and that the results remain confidential. We do not actually encourage the use of genetic testing for assessing the risk of developing Alzheimer's disease. We feel that it is somewhat unethical as it does not entail any health benefit and the results cannot |
actually predict whether a person will develop dementia (irrespective of the particular form of ApoE s/he may have). We are totally opposed to insurance companies having access to results from genetic tests for the following reasons: - This would be in clear opposition to the fundamental principle of insurance which |
is the mutualisation of risk through large numbers (a kind of solidarity whereby the vast majority who have relatively good health share the cost with those who are less fortunate). - Failure to respect this principle would create an uninsurable underclass and lead to a genetically inferior group. - This |
in turn could entail the further stigmatisation of people with dementia and their carers. - In some countries, insurance companies manage to reach decisions on risk and coverage without access to genetic data. - We therefore urge governments and the relevant European bodies to take the necessary action to prohibit |
the use or possession of genetic data by insurance companies. Alzheimer Europe recognises the importance of research into the genetic determinants of Alzheimer’s disease and other forms of dementia. Consequently, - we support the use of genetic testing for the purposes of research provided that the person concerned has given |
informed consent and that the data is treated with utmost confidentiality; and - we would also welcome further discussion about the problem of data management. In our opinion, any individual who wishes to take a genetic test should be able to choose to do so anonymously in order to ensure |
that such information does not remain in his/her medical file. At its Annual General Meeting in Munich on 15 October 2000, Alzheimer Europe adopted recommendations on how to improve the legal rights and protection of adults with incapacity due to dementia. This included a section on bioethical issues. These recommendations |
obviously need to guide any response of the organisation regarding genetic testing for people who suspect or fear they may have dementia and also those who have taken the test and did develop dementia. - The adult with incapacity has the right to be informed about his/her state of health. |
- Information should, where appropriate, cover the following: the diagnosis, the person's general state of health, treatment possibilities, potential risks and consequences of having or not having a particular treatment, side-effects, prognosis and alternative treatments. - Such information should not be withheld solely on the grounds that the adult is |
suffering from dementia and/or has communication difficulties. Attempts should be made to provide information in such a way as to maximise his/her ability to understand, making use of technology and other available techniques to enhance communication. Attention should be paid to any possible difficulty understanding, retaining information and communicating, as |
well as his/her level of education, reasoning capacity and cultural background. Care should be taken to avoid causing unnecessary anxiety and suffering. - Written as well as verbal information should always be provided as a back-up. The adult should be granted access to his/her medical file(s). S/he should also have |
the opportunity to discuss the contents of the medical file(s) with a person of his/her choice (e.g. a doctor) and/or to appoint someone to receive information on his/her behalf. - Information should not be given against the will of the adult with incapacity. - The confidentiality of information should extend |
beyond the lifetime of the adult with incapacity. If any information is used for research or statistical purposes, the identity of the adult with incapacity should remain anonymous and the information should not be traceable back to him/her (in accordance with the provisions of national laws on respect for the |
confidentiality of personal information). Consideration should be given to access to information where abuse is suspected. - A clear refusal by the adult with incapacity to grant access to information to any third party should be respected regardless of the extent of his/her incapacity, unless this would be clearly against |
his/her best interests e.g. carers should have provided to them information on a need to know basis to enable them to care effectively for the adult with incapacity. - People who receive information about an adult with incapacity in connection with their work (either voluntary or paid) should be obliged |
to treat such information with confidentiality. People who take genetic tests and do not receive adequate pre and post test counselling may suffer adverse effects. Fear of discrimination based on genetic information may deter people from taking genetic tests which could be useful for research into the role of genes |
in the development of dementia. Certain tests may be relevant for more than one medical condition. For example, the ApoE test is used in certain countries as part of the diagnosis and treatment of heart disease. There is therefore a risk that a person might consent for one type of |
About American Frontiers About American Frontiers: A Public Lands Journey America's public lands are a treasured part of our national heritage, representing its grandeur, bountiful promise, and vast natural resources. |
All citizens share in the rights and the responsibilities of seeing that our public lands are cared for and managed in a way that meets the current and future needs |
of the American people. To highlight the beauty, the accessibility, and the benefits of our public lands, the Public Lands Interpretive Association (PLIA), an Albuquerque, New Mexico-based non-profit organization that |
provides interpretive and educational resources to the public, mapped out a Canada-to-Mexico trek exclusively on public lands, called American Frontiers: A Public Lands Journey. The Journey, or Trek,involved two groups |
of travelers: one starting north from the Mexican border and the second headed south from the Canadian. Their route lay entirely on public lands, a feat that has never been |
accomplished before. The trek began on July 31, 2002 and ended two months later when the two teams met in Wasatch-Cache National Forest near Salt Lake City, Utah on September |
27. Inspired by American Frontiers: A Public Lands Journey, National Geographic Society has designed its Geography Action! 2002 curriculum around the theme of public lands. Aimed at teaching school-aged children |
the beauty and the benefits of America's public lands, Geography Action! 2002 followed the trekkers along the two-month journey, highlighting the diversity and grandeur of our nation's public lands. To |
demonstrate the different ways people get about on our public lands--and to stay within the 60-day limit of the journey--trek participants utilized numerous modes of transportation for this historic border-to-border |
journey across America. The hiked and backpacked, rode horses, mountain bikes, ATVs and dual sport motorcycles; rafted, canoed, drove pickup trucks, motorboats and 4WD vehicles, and even spent a few |
leisurely days on a houseboat. Along the route the two teams attended special events, round table discussions, visited schools and communities to learn about public land issues. And, of course, |
they saw some of the most spectacular scenery of the American West. Their journal entries eloquently describe the feelings public lands awoke in them and also the daily routine of |
the long trek. You'll enjoy reading them. Three years in the making, American Frontiers: A Public Lands Journey has enlisted numerous partners and sponsors including the National Geographic Society, the |
Department of the Interior, the USDA Forest Service, Bureau of Land Management, USGS, National Environmental Education and Training Foundation, Fire Wise Communities, American Honda, Kodak, the Coleman Company, and many |
others. For a full list of our sponsors, please look under "Our Sponsors" on the home page. To learn more about American Frontiers, please spend some time on this website, |
read the team members' journals, enjoy the photographs ot follow their route on the maps. For more information about American Frontiers, please contact the Public Lands Interpretive Association, 6501 Fourth |
public lands. To find out more about recreation opportunities on public lands, please visit the Public Lands Information Center online. There, you can find detailed recreation information, interactive recreation maps, |
Three weeks later, in a millrace on the American River in northern California, John Marshall spotted the flicker of gold. By the end of summer, 1849, the Los Angeles garrison, like every other encampment of the New York volunteers, was abandoned, the harbinger of Anglo-Saxon civilization scattered to the hills, |
the coastal towns and villages of California half-deserted. The little port of San Francisco had become the focus of world migration. Captain Folsom, the staff quartermaster, having secured appointment as collector of the port, was on his way to becoming a millionaire. The Russ family, purveyors of Moroccan leather and |
holiday fireworks, had opened a jewelry shop and begun assembling an empire of hotels, beer gardens, office buildings, and residential blocks. Sergeant John C. Pulis, late of Lippitt’s monstrous Company F, had become the first sheriff of San Francisco. Lieutenant Edward Gilbert was editing the Alta California , the leading |
newspaper in the territory; Captain Naglee (he of the bathtime rebellion) had founded the territory’s first bank; Lieutenant Hewlett had opened a boardinghouse; Captain Frisbee had started a commission agency and was in prospect of marrying the eldest daughter of General Vallejo; Lieutenant Vermeule, the plague of Abel Stearns, had |
set himself up as a lawyer and would soon be elected a delegate to the California constitutional convention and a member of the state legislature; and the Reverend Mr. Thaddeus M. Leavenworth, chaplain to the regiment, had attained the quasi-judicial position of alcalde of San Francisco and was granting homesteads |
and auctioning public lands with a Christian generosity that scandalized even his former associates. As for the colonel, he was well on his way to a second career (and a second marriage and a second family) as a legal counselor, politician, and founder of a grandiose ghost city called New-York-of-the-Pacific, |
which endures today only in the name of a slough on the edge of San Francisco Bay. The former New York boys were scattered by then throughout California, styling themselves doctors, lawyers, judges, or capitalists. A few in San Francisco called themselves the “Hounds”—or, on formal occasions, the “Regulators.” They |
were the first recognizable New York—style drinking-and-marching society in the Far West, and their raucous behavior soon aroused the more orderly citizens of the town to form the prototype of San Francisco’s several committees of vigilance. For better or worse, the Americanization of California had begun. |
- Historic Sites George C. Marshall Museum The museum dedicated to the life of General George C. Marshall also houses many of his papers in the research library. This museum |
profiles one of the 20th century's greatest military and diplomatic leaders through exhibits related to the Marshall Era (1880-1960). Marshall led the Allied military through World War II and organized |
The scientific world is abuzz with news of the ratification of the existence of the subatomic particle called the Higgs boson - or more colloquially, the 'God particle.' This subatomic |
particle's existence - which was verified recently (with virtually near certainty) by experiments at the Large Hadron Collider in Switzerland - lends credence to several long-standing physical theories such as |
the so-called Standard Model and the Big Bang Theory. The nickname God particle is ironic for two reasons. First, generally, the nuclear physicists who deal with these matters - postulating |
the fundamental physical laws of the universe and then setting about to either verify or refute them - tend not to be regular church-goers. While there are some highly prominent |
scientists who balance personal, religious beliefs with professional, scientific quests, most probably go along with the thoughts of the world-famous physicist, Stephen Hawking: I regard the brain as a computer |
which will stop working when its components fail. There is no heaven or afterlife for broken down computers; that is a fairy story for people afraid of the dark. [Interview |
in The Guardian, 7/9/12] Spontaneous creation is the reason there is something rather than nothing, why the universe exists, why we exist. It is not necessary to invoke God... [from |
his book; The Grand Design, 2010] So it is a bit ironic that physics' most famous quest has resulted in the discovery of the 'God particle.' Most physicists are quite |
comfortable having their names associated with famous - even if dead - humans like Newton, Einstein or the afore-mentioned Hawking. One will find few, if any, attributions to deities in |
the objects that physicists discover and name or the theories they propose. Second, and more importantly, the discovery that the God particle really exists does not - as the name |
suggests - imply that God played some role in the creation of the universe. In fact, quite the opposite. The matter is discussed at some length in the July 9 |
Daily Beast by Lawrence Kraus, a well-known physicist/cosmologist from Arizona State University: This term [God particle] appeared first in the unfortunate title of a book written by physicist Leon Lederman |
two decades ago, and while to my knowledge it was never used by any scientist (including Lederman) before or since, it has captured the media's imagination. What makes this term |
particularly unfortunate is that nothing could be further from the truth. Assuming the particle in question is indeed the Higgs, it validates an unprecedented revolution in our understanding of fundamental |
physics and brings science closer to dispensing with the need for any supernatural shenanigans all the way back to the beginning of the universe...If these bold, some would say arrogant, |
notions derive support from the remarkable results at the Large Hadron Collider, they may reinforce two potentially uncomfortable possibilities: first, that many features of our universe, including our existence, may |
be accidental consequences of conditions associated with the universe's birth; and second, that creating "stuff" from "no stuff" seems to be no problem at all-everything we see could have emerged |
as a purposeless quantum burp in space or perhaps a quantum burp of space itself. Humans, with their remarkable tools and their remarkable brains, may have just taken a giant |
step toward replacing metaphysical speculation with empirically verifiable knowledge. The Higgs particle is now arguably more relevant than God. So the term God particle was first used by a scientist, |
but was picked up and popularized by the media. It's catchy and enhances interest in the subject among the public. But like so much else that the media promotes, it |
Acrylic A synthetic fabric often used as a wool substitute. It is warm, soft, holds colors well and often is stain and wrinkle resistant. Angora A soft fiber knit from fur of the Angora rabbit. Angora wool is often combined with cashmere or another fiber to strengthen the delicate structure. Dry cleaning is reccommended for Angora products. Bedford A strong |
material that is a raised corded fabric (similar to corduroy). Bedford fabric wears well and is usually washable. Boucle A fabric made with boucle yarn(s) in wool, rayon and or cotton causing the surface of the fabric to appear looped. Brocade An all-over floral, raised pattern produced in a similar fashion to embroidery. Burnout Process of printing a design on |
a fabric woven of paired yarns of different fibers. One kind of yarn is burned out or destroyed leaving the ground unharmed. Cable Knit Patterns, typically used in sweaters, where flat knit columns otherwise known as cables are overlapped vertically. Cashmere A soft, silky, lightweight wool spun from the Kashmir goat. Cashmere must be dry-cleaned due to its delicate fibers |
and is commonly used in sweaters, shawls, outerwear, gloves and scarves for its warmth and soft feel. Chiffon A common evening wear fabric made from silk, cotton, rayon or nylon. It's delicate in nature and sheer. Chintz A printed and glazed fabric made of cotton. Chintz is known for its bright colors and bold patterns. Corduroy Cotton fibers twisted as |
they are woven to create long, parallel grooves, called wales, in the fabric. This is a very durable material and depending on the width of the wales, can be extremely soft. Cotton A natural fiber that grows in the seed pod of the cotton plant. It is an inelastic fiber. Cotton Cashmere A blend of cotton and cashmere fibers, typically |
85% to 15% respectively, this combination produces an extremely soft yarn with a matte finish. Crepe Used as a description of surfaces of fabrics. Usually designates a fabris that is crimped or crinkled. Crinoline A lightweight, plain weave, stiffened fabric with a low yarn count. Used to create volume beneath evening or wedding dresses. Crochet Looping threads with a hooked |
needle that creates a wide, open knit. Typically used on sweaters for warm seasons. Denim Cotton textile created with a twill weave to create a sturdy fabric. Used as the primary material of blue jeans. Dobby Woven fabric where the weave of the fabric actually produces the garment's design. Embroidery Detailed needlework, usually raised and created by yarn, silk, thread |
or embroidery floss. Eyelet A form of lace in a thicker material that consists of cut-outs that are integrated and repeated into a pattern. Usually applied to garments for warmer seasons. Faille A textured fabric with faint ribbing. Wears wonderfully for hours holding its shape due to the stiffness of the texture. Used in wedding dresses and women's clothes. Fil'Coupe |
A small jacquard pattern on a light weight fabric, usually silk, in which the threads connecting each design are cut, creating a frayed look. French Terry A knit cloth that contains loops and piles of yarn. The material is very soft, absorbent and has stretch. Gabardine A tightly woven twill fabric, made of different fibers such as wool, cotton and |
silk. Georgette A crinkly crepe type material usually made out of silk that consists of tightly twisted threads. Georgette is sheer and has a flowy feeling. Gingham Two different color stripes "woven" in pattern to appear checked. Glen Plaid Design of woven, broken checks. A form of traditional plaid. Guipure Lace A lace without a mesh ground, the pattern in |
held in place by connecting threads. Herringbone A pattern originating from masonry, consists of short rows of slanted parallel lines. The rows are formatted opposing each other to create the pattern. Herringbone patterns are used in tweeds and twills. Hopsack A material created from cotton or woolthat is loosely woven together to form a coarse fabric. Houndstooth A classic design |
containing two colors in jagged/slanted checks. Similar to Glen Plaid. Jacquard A fabric of intricate varigated weave or pattern. Typically shown on elegant and more expensive pieces. Jersey A type of knit material usually made from cotton and known to be flexible, stretchy, soft and very warm. It is created using tight stitches. Knit A knit fabric is made by |
interlocking loops of one or more yarns either by hand with knitting needles or by machine. Linen An exquisite material created from the fibers of the flax plant. Some linen contain slubs or small knots on the fabric. The material wrinkles very easily and is a light fabric perfect for warm weather. Lurex A metallic fiber woven into material to |
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