Are Your Home Genetic Testing Results Really Private?

You may have seen ads on televsion for at home genetic testing kits. Many people are doing these tests for geneology and others are doing them to learn about inherited health risks. While we know our ancestry, my husband and I considered doing the genetic testing kits from 23 and Me for possible inherited health risks. Once we learned that 23 and Me isn’t associated with HIPAA I returned the kits for a refund. We have now chosen kits from Life Extension, as they use labs that are HIPAA controlled. Life Extension offers a lot of other services, but once a year they provide a sale on genetic testing of various kinds.

First of all you probably know that we are all born with traits such as the color of our hair, eyes and other factors. These factors and many other traits define who we are. They are the basic unit of heredity.  Our own unique blueprint. Our DNA.  Each containing a coded set of instructions to make a protein. Humans have an estimated 20,500 genes, varying in length from a few hundred to more than 2 million base pairs. They affect all aspects of our physiology, providing the code that determines our physical appearance, the biochemical reactions that occur inside our cells and to some extent our personalities.

The Human Genome Project began in 1990 and was completed by 2003. This project aimed to map out the entire human genetic code. Using the information hidden within our genetic code, scientists have been able to identify genes that contribute to various diseases. By logging common genetic variation in the human population, researchers have actually been able to identify over 1,800 disease-associated genes, affecting illnesses ranging from breast cancer to Alzheimer’s. The underlying genetic influences that affect complex diseases such as heart disease are still not yet fully understood.

Our genes can become faulty. Such is the case of cancer. Cancer is not just the result of one or two genetic mutations it takes a whole series of mistakes for a tumor to form. Cells contain oncogenes and tumor suppressor genes, whose healthy function is to tell the cell when it should and should not divide. If these become damaged, the cell cannot switch off its cell division process and it wil keep making copies of itself indefinitely.

Each time a cell divides there is a risk that it will make a mistake when copying its DNA, and gradually the cell makes more and more errors, accumulating mutations that allow the tumor to progress into a malignant cancer. Many health habits contribute to cells going wrong as well as environmental influences.

The availability of at home genetic testing kits can seem to be an easy and very private way to learn about our inherited conditions. They help people understand how important health is and how we can best work on improvement.

At home testing isn’t the only way to learn about your inherited issues, a whole new idustry had spawned from the Human Genome results. Genetic testing is already a billion-dollar industry. Some researchers estimates that it could grow to $10 billion in the next decade. Many doctors can refer patients to a genetic counselor in order to guide people through the process and what their results mean.  Just because a test comes back negative for any disease doesn’t mean that a person won’t get the disease. The development of any disease varies on many factors. With the help of a doctor or specialist in the genetic field the patient can be guided in a direction that can help them deal with the problems that might be facing them from the test results.

Many research articles claim that some results suggests identifing genetic issues may be innacurate. As much as 40% of these tests are from at home kits. Another factor with 23 and Me is that they use a separate independent facility to read the results and then the results can be sent to your doctor to provide you with the results. The lab from Life Extension provides the patient with all of the  information we need and are tabulated so that the patient can understand the results. While tests like these help people take control of health prevetnion, patients still may need further understanding from a genetic counselor or a doctor skilled in this field.

The privacy of your at home testing results can be questionable. As I mentioned earlier 23 and Me isn’t part of HIPAA regulations. They do have a form that people can sign to keep their results private but there are loopholes. Without the regulations of HIPPAA your information can be sold unknowningly. HIPPAA is the acronym of the Health Insurance Portability and Accouuntability Act of 1996. HIPAA is best known for protecting the privacy of patients and ensuring patient data is appropriately secured with those requirements added by the HIPPAA Privacy Rule of 2000 and the HIPAA Security Rule of 2003. The requirement for notifying individuals of a breach of their health information was introduced in the Breach Notification Rule of 2009.

Security becomes important when the standardized electronic transmission of common administrative and financial transactions remain private in billing and payment processing. Privacy and security standards to protect the confidentiality and integrity of individually identifiable health information. Business associates of a covered entity are not directly controlled by the regulations, but mandatory contracts require them to protect the privacy of individually identifiable information. Government agencies specifically named in the regulations are covered entities, as are agencies that function as a health plan or a health care provider.

HIPAA improves efficiency in the healthcare industry, to improve the portability of health insurance to protect the privacy of patients and health plan members, and to ensure health information is kept secure and patients are notified of breaches of their health data.

Whether you are submitting the costs to your insurance company or not we need to be cautious of who we are working with. Read the fine print.

In a time where most of our personal information seems to be open for many companies to buy.  We need to obtain as much control as we can as to who sees what should be private.

 

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