As clinicians and biomedical researchers identify and develop advance strategies and technologies to personalized patient care, there are many questions arising regarding the ethical, legal and social implications and patient rights.
Following the FAQ is a brief list of articles that discuss many of these concerns, some of which touch on the role genetics and genomics plays in defining personalized care, confidentiality issues, Electronic Medical Record (EMR) and genetic discrimination. We invite you to read the articles and use them as a starting point when discussing your healthcare plan with your physician.
Or, for more information on the role these issues play in personalized healthcare, contact The Center for Personalized Healthcare. We'll be happy to answer any questions you may have.
How can I ensure my personal genetic information remains private?
Genetic information about applicants or employees must be treated using the same guidelines that medical information is treated as indicated by The Health Insurance Portability and Accountability Act (HIPAA). Genetic information must be kept confidential and separate from other personnel information in separate medical files.
Who will have access to my medical records and genetic information?
Most of us believe that our medical and other health information is private and should be protected, and we want to know who has this information. The Privacy Rule (HIPAA), a Federal law, gives you rights over your health information and sets rules and limits on who can look at and receive your health information.
Is it possible for my personal genetic information to be used to limit certain healthcare care services, employment, insurance coverage (i.e. disability, medical, life)?
The Genetic Information Non-discrimination Act of 2008 (GINA) was signed into law by former President George W. Bush on May 21, 2008. GINA is officially intended to protect patients and families against the potential misuse of medical information specifically genetic information. GINA makes it illegal for health insurers and employers to access (i.e., request, require or purchase) genetic information and discriminate against an applicant, employee or his family member because of his or her genetic information. Genetic discrimination can be defined as the unfair treatment of individuals due to variations in their DNA that increase their chances of developing a genetic or inherited disease.
Title I Protection
Health insurance companies are prohibited from denying coverage or charging higher premiums to individuals based on genetic information.
Title II Protection
Employers are prohibited from using individuals’ genetic or family health history information when making hiring, firing, job assignment or promotion decisions.
GINA will not override any state or local law which provides greater protections from discrimination or greater privacy protections.
How will payers decided whether to cover these types of services?
Due to the economic climate and rising costs of healthcare, private payors may limit coverage or deny claims for personalized healthcare diagnostics or therapies until there is a proven track record supporting clinical utility and improve patient outcomes. However, genetic services and diagnostic tests may be covered if medically necessary and documented by the appropriate healthcare provider.