Q. Who should access genetic information?
A clinical geneticist believes that if anyone is to own genetic information, it has to be all those who have inherited it and, more importantly, it must be available to all those who might be at risk.
Q. How Can genetic information be used?
Genetic information or genetic test results can be used to prevent the onset of diseases, or to assure early detection and treatment, or to make reproductive decisions. This information can also be used for nonmedical purposes, such as insurance and employment purposes.
Q. Should employers have access to genetic information?
Employers should not require or request that employees or potential employees take a genetic test or provide genetic information as a condition of employment or benefits. Employers should not obtain or disclose genetic information about employees or potential employees under most circumstances.
Q. Why should we share genetic information?
It provides personalized information about your health, disease risk, and other traits. It may help you be more proactive about your health. It does not require approval from a healthcare provider or health insurance company. It is often less expensive than genetic testing obtained through a healthcare provider.
Q. Why do we need genetic privacy?
When the access of genetic information is regulated, it can prevent insurance companies and employers from reaching such data. This could avoid issues of discrimination, which oftentimes leaves an individual whose information has been breached without a job or without insurance.
Q. Are there legal protections for keeping someone’s genetic information private?
The federal laws that deal with genetic information are GINA (the Genetic Information Nondiscrimination Act of 2008) and, more recently, HIPAA. GINA is essentially an anti-discrimination law that has nothing to do with privacy. It also restricts employers from asking for or buying genetic information.
Q. Is genetic testing illegal?
Title II makes it illegal for employers to use a person’s genetic information when making decisions about hiring, promotion, and several other terms of employment. This part of the law went into effect on November 21, 2009. GINA and other laws do not protect people from genetic discrimination in every circumstance.
Q. What happens if you have an extra chromosome?
For example, an extra copy of chromosome 21 causes Down syndrome (trisomy 21). Chromosomal abnormalities can also cause miscarriage, disease, or problems in growth or development. The most common type of chromosomal abnormality is known as aneuploidy, an abnormal chromosome number due to an extra or missing chromosome.
