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At AGS, we take your privacy very seriously.Lock.png

AGS adheres to strict confidentiality and privacy laws that ensure that genetic information is kept private or only shared with your physician. Unlike several other genetic companies, AGS does not sell or transfer any personal data to any third parties.

 

Privacy & Protection

Confidentiality is a respected part of the AGS code of ethics. Your privacy is our number one priority. We pledge to uphold the highest standards of bioethics and maintain rigorous policies and procedures to keep your data safe and secure. We won’t even share your DNA data with your physician without your permission and we wont ever sell your data. That is our strict policy. We guarantee it.

Genetic Information you share with others could be used against your interests.

Genetic nondiscrimination laws and why it should matter to you

First, consider the true definition of Privacy: (noun) the state of being free from public attention. Next, consider the definition of Information Privacy: the right to have some control over how your personal information is collected and used. Now, consider Genetic Information Privacy: there is no such definition.

Some laws limit how the information can be used, but none truly protects privacy. And that may not even be possible, because genetic information is unique to every individual. It cannot be de-identified; even if separated from obvious identifiers like name and Social Security number, it is still forever linked to only one person in the world.

There are two federal laws that deal with genetic information; GINA (the Genetic Information Nondiscrimination Act of 2008) and HIPAA (Health Insurance Portability and Accountability Act). GINA is essentially an anti-discrimination law that has nothing to do with privacy. It prevents group health and Medicare supplemental plans from using genetic information to discriminate against you when it comes to insurance. However, this law does not prevent genetic information to be considered when applying for life, disability, or long-term care plans. GINA also does not apply unless the employer has more than 15 employees.

 

 

HIPPA National Standards

HIPAA established national standards to protect individuals' medical records and other personal health information and applies to health plans, health care clearinghouses, and those health care providers that conduct certain health care transactions electronically. In 2013, the HIPAA Omnibus Rule amended HIPAA regulations to include genetic information in the definition of Protected Health Information (PHI). It also prevents use of the data in underwriting for all other types of health insurance plans, but still not for life, disability, or long-term care insurance. Excluding long-term care insurance guarantees that anyone with a tested genetic predisposition to Alzheimer’s, for example, will be uninsurable. According to the definition, genetic information includes your genetic tests and a family member’s, your or a family member’s fetus or embryo, and evidence of a disease in a family member.

One major problem is that GINA only prohibits discrimination based on genetic information about someone who has not yet been diagnosed with a disease; that is, the disease is not yet "manifest." Today there are many tests for genetic markers that may—or may not—be precursors of a disease and also may mean that you could benefit from preventive treatment. If the presence of genetic markers is considered a “manifestation” of a disease, then neither GINA nor HIPAA applies to the information.

Note: At this time, other genetic testing companies/businesses are only self-regulated and can sell their genetic database at will. This allows them to market and sell genetic testing kit for a small cost because they make much more money selling your genetic data in large chunks.

 

Life Insurance Eligibilty

Because genetic testing is the future of personalized medicine, health insurers are banned from denying coverage based on results. The same does not apply for life insurance. Since 2008, with the passing of the Genetic Information Nondiscrimination Act (GINA), the federal government has barred health insurance companies from denying coverage to those with a gene mutation. But the law does not apply to life insurance companies, long-term care, or disability insurance. These companies can ask about health, family history of disease, or genetic information, and reject those that are deemed too risky.

With the widespread use of EHRs (Electronic Health Records) that allows for a lifetime of personal health/medical data to be just a click away, this technology creates a significant privacy risks for all health information and can be very useful, but can also be dangerous in the wrong hands.

 

Employment Discrimination

A recurring issue in medical privacy is lawful uses of information based on overly broad compelled authorizations, such as in states where individuals must sign a release for substantially all of their health records as a condition of employment.

Recent advances in genetic research hold much promise for improving health. However, genetic information can also be used unfairly to discriminate against or stigmatize individuals on the job. For example, people may be denied jobs or benefits because they possess particular genetic traits--even if that trait has no bearing on their ability to do the job. In addition, since some genetic traits are found more frequently in specific racial or ethnic groups, such discrimination could disproportionately affect these groups.

 

Newborn screening

Newborn screening is another problem that arises with EHRs (Electronic Health Records)—and genetic data. Tests done at birth vary from state to state, but all states must screen for at least 21 disorders by law, and some states test for 30 or more. Currently, tests are limited to conditions for which childhood medical intervention is possible and may be beneficial.

What if that practice changes to include—or mandate—tests for adult-onset disorders that cannot be treated in childhood—or for which there is no known treatment, such as ALS, Huntington’s disease, or Alzheimer’s? The privacy implications of starting a lifetime EHR that includes information about genetic diseases are enormous, and become even greater if the record comes to include evidence of a genetic propensity toward future, as yet incurable, diseases (not to mention the emotional impact on those designated at birth to succumb to a tragic and incurable disease). A great deal of thoughtful analysis and decision-making is required to protect this data—and the individuals connected to it—from exposure, while at the same time not excluding this data from important research.

 

Familial DNA

Finally, there is a complex ethical issue around the consent for disclosure of genetic information for research purposes. We’re used to thinking of consent as individual, which makes sense when the health information is mainly about that person. Genetic information is different: analysis of an individual’s DNA is highly informative about his or her offspring, siblings, and parents. Genetic information also bears on demographic categorization, as many genetic predispositions toward specific diseases or conditions are strongly associated with specific ethnic or racial groups. It seems odd that obtaining an individual consent is all that is required yet the results reveal significant information about many other people who may or may not be willing to consent. 

 

 

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Do you have questions about our testing and the privacy of your data?. We' encourage you to fill out the form on the right and we'll be in touch.