|
Will the results obtained from this study affect my ability to be employed or obtain medical insurance?
The Beggs lab does not intend to reveal research information on your family. Your involvement and potential results are kept privately and we will not release any information unless compelled to do so by law.
To help us protect your privacy, we have obtained a Certificate of Confidentiality from the National Institutes of Health (NIH). With this Certificate, our researchers cannot be forced to disclose information that may identify you, even by court subpoena, in any Federal, State, or local civil, criminal, administrative, legislative, or other proceedings. There are a few exceptions to this added protection:
- Identifying information may be released for audits or evaluations by the U.S. Government of federally funded research.
- When you or a family member voluntarily choose to release information
- Under circumstances of child abuse, intent to injure others or oneself, or other life threatening events.
Although we will do our best to keep this information under strict confidentiality, there is a risk that this information will become available to employers or potential insurers.
This is why some laws have been created with the purpose of protecting individuals from genetic discrimination. For those covered by group policies, the Health Insurance Portability and Accountability Act (HIPAA, 1997) declares that "genetic information" cannot be considered a preexisting condition. A preexisting condition is something for which the person has been treated or diagnosed within the last six months (including prescription medication). In other words, although insurance companies are entitled to refuse to cover expenses related to preexisting conditions, the HIPAA prevents them to refuse to pay expenses just based on genetic information. It is important to know that this law does not prevent insurance plans from raising the cost of health plans for the entire group. In addition, under HIPAA, the Department of Health and Human Services promulgated several regulations regarding privacy of genetic information.
The Equal Employment Opportunity Commission (EEOC) has done its part in trying to protect individuals from genetic discrimination as well. The EEOC already enforces the Americans with Disabilities Act (ADA) to protect individuals with disabilities from job discrimination. The EEOC investigates claims in which the ADA has been violated, filing suits seeking damages for those harmed by violations. Similarly, the EEOC issued a guidance statement saying that the ADA would also protect individuals who have been victims of genetic discrimination.
These regulations help to shape the attitude of our society towards genetic information. Most US States already prohibit genetic discrimination by health insurers, employers, or both. Despite this, the Beggs lab can not guarantee that if this study reveals that you have a neuromuscular disease-causing mutation there won't be economical implications for you or your family. Nevertheless, it may help to know that, as of today, there is no documented evidence of health insurance discrimination resulting from genetic testing or participation in research studies.
To read more about this topic, visit the National Human Genome Research Institute's website sponsored by the National Institutes of Health.
|
