Using just your name and the millions of genealogy records publicly available on the Web, an inquisitive and resourceful person -- someone considering providing you with life or disability insurance, perhaps -- could come to know more about you genetically than you might even know about yourself. And that information could be used against you in many ways.
Given these risks, why should anyone consider getting genetic testing done in the first place?
Well because the benefits of clinically appropriate genetic testing are immensely high. The results of genetic testing can provide valuable information about your risk for certain inherited conditions and can be used to provide screening regimens and treatments that lengthen your life. A negative genetic test is also useful since it can offer an individual relief and reduce unnecessary screenings and treatments.
No one should ever have to decline genetic testing because of fear of discrimination. Unfortunately, for some people this very real possibility of being denied insurance prevents them from accessing lifesaving treatments that can be offered by healthcare workers.
And to whose benefit? Certainly not yours or mine Sharon Moalem M. Hey there!
Hacking Your Genome: How Insurance Companies Legally Discriminate Against You and Your Family
Got a minute? In this case your risk of cancer is the same as other members of the population. Find out about causes of cancer and reducing your risk. You might have relatives with cancer. But your family history may not be strong enough to recommend gene testing. In certain situations, the genetics counsellor might suggest you have regular screening. This is more likely if members of your family have breast or bowel cancer. Your genetic counsellor will offer you a gene test if you have a strong family history and they think this might be caused by a faulty gene.
Your counsellor will discuss the advantages and disadvantages with you. If you are found to have a gene fault there are things you can do to reduce your risk of developing cancer. For example, you might be able to make certain lifestyle changes. You may be able to have regular screening to detect cancer early if screening tests are available for that cancer type.
For certain cancers, you might be able to take medicines to lower the risk of developing the cancer.
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Or you may have risk reducing surgery. Not knowing whether you have a faulty gene can cause stress and worry. Finding out the result could reduce this worry. Some genetic test results identify a variation in a gene. But it may not be clear whether it increases your cancer risk and this can be difficult to cope with. You may have constant worry about developing cancer if the test finds a faulty gene.click
Genetic Testing and Insurance
If the test is positive you may also need to tell other relatives that they may have inherited the gene. In the future you may find it harder to get health and life insurance after having a genetic test. But, currently the Association of British Insurers ABI and the Government have agreed to a ban on asking people for the results of predictive genetic tests for cancer. Insurance companies can still ask about family history. If you have had any problems with an insurance company that you can't sort out, you can make a complaint to the Financial Ombudsman Service, free of charge.
Before you have a test, the genetic counsellor will talk to you about what your options are if you do have a faulty gene. This is usually part of the process of deciding whether to have the test or not. The options will depend on:. Read about possible screening and treatment options on the page about getting your genetic test results. Making a decision about whether to have gene testing can be difficult. It is normal to feel anxious. Thinking about the possibility of getting cancer is difficult.
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It may also stir up emotions you felt when other family members were diagnosed with cancer and what they went through. It is important to take time to think it through. Before you decide, it can help to think about these questions:. Deciding whether to have a test is your decision to make. But talking with your family and knowing how they feel may help you to make the choice.
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Which attributes of whole genome sequencing tests are most important to the general population? If you build it, they will come: unintended future uses of organised health data collections Kieran C. Genomic testing in cancer: patient knowledge, attitudes, and expectations.
1. State laws protecting genetic information vary
References Publications referenced by this paper. Prohibiting genetic discrimination. Kathy L.