The data from your genetic test is stored locally. Data from whole genome sequencing is stored in a secure national database. Where necessary, information that can identify you, such as your name and address, is removed. Your data can only be accessed by approved staff. If you have a genetic test including whole genome sequencing on the NHS, it's not possible to stop your data being stored and shared. If you have already opted out of data from your health records being shared , this does not apply to your genetic test data.
Find out more about what data about you has been stored and how it is used. The NHS is responsible for your genetic data. We do not know what every DNA variant means at this time.
Doctors, scientists, genetic counselors, and computer experts are all on the team like a group of people sitting down to read and talk about a book. To decide which variant causes the disease you are interested in, the team looks at your results your list of variants , your symptoms, and your family history. The team may or may not be able to find the cause of the disease you are interested in.
If the team finds the cause of the disease, they confirm the result with a different test. Some reasons why the team may not be able to find the cause of the disease can be: Some parts of the DNA cannot be sequenced. Not enough is known about the disease at this time. The test that was performed did not look at the part of your DNA that is causing the disease, and a different test needs to be ordered.
The team was not given enough information about your symptoms or family history to interpret the results. Step 6— Receiving your results The lab will give the written results back to your doctor or genetic counselor. Results of clinical tests will go in your medical record.
Not all health insurance policies pay for genetic testing. So, before you have a genetic test, check with your insurance provider to see what will be covered. In the United States, the federal Genetic Information Nondiscrimination Act of GINA helps prevent health insurers or employers from discriminating against you based on test results. Under GINA, employment discrimination based on genetic risk also is illegal. However, this act does not cover life, long-term care or disability insurance. Most states offer additional protection.
Depending on the type of test, a sample of your blood, skin, amniotic fluid or other tissue will be collected and sent to a lab for analysis. The amount of time it takes for you to receive your genetic test results depends on the type of test and your health care facility. Talk to your doctor, medical geneticist or genetic counselor before the test about when you can expect the results and have a discussion about them. If the genetic test result is positive, that means the genetic change that was being tested for was detected.
The steps you take after you receive a positive result will depend on the reason you had genetic testing. Talk to your doctor about what a positive result means for you. In some cases, you can make lifestyle changes that may reduce your risk of developing a disease, even if you have a gene that makes you more susceptible to a disorder.
Results may also help you make choices related to treatment, family planning, careers and insurance coverage.
In addition, you may choose to participate in research or registries related to your genetic disorder or condition. These options may help you stay updated with new developments in prevention or treatment. A negative result means a mutated gene was not detected by the test, which can be reassuring, but it's not a percent guarantee that you don't have the disorder. The accuracy of genetic tests to detect mutated genes varies, depending on the condition being tested for and whether or not the gene mutation was previously identified in a family member.
Even if you don't have the mutated gene, that doesn't necessarily mean you'll never get the disease. Also, genetic testing may not be able to detect all genetic defects. In some cases, a genetic test may not provide helpful information about the gene in question. Genetic Testing. Biomarker Testing. Genetics and Breast Cancer. Genetics and Pancreatic Cancer. Lynch Syndrome. I've Tested Positive, Now What? Information for Healthcare Professionals.
Men with Mutations. Women with Mutations. Managing Menopause. Genetics and Prostate Cancer. Genetics and Ovarian Cancer.
Genetics and Endometrial Cancer. Genetics and Colorectal Cancer. Information for Researchers. If you are thinking about genetic testing and wondering how to proceed, the following steps can help you make an informed decision and move forward with your plan.
Genetic testing can provide important, life-saving information. Seeing a genetics expert can alleviate much of the uncertainty about whether you should have testing, which test to order, and what the test results mean for you and your family. This is the most reliable way to obtain up-to-date information and to formulate a plan.
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