The genetic counselors at CooperGenomics are asked all sorts of questions during their consultations with patients:
- Does CooperGenomics test for mutations in the BRCA1 and BRCA 2 genes?
- No. In addition, we don’t recommend testing outside the context of a formal cancer genetic counseling evaluation. We can refer you to the National Society of Genetic Counselors website to find a cancer genetic counselor in your area.
- So since my carrier screening results came back negative, does this mean that my child will definitely be healthy?
- It does not. No test is able to assure a pregnancy that is 100% healthy, however, given your negative screen, the risk for you to have a child with any of the conditions of our panel has been significantly reduced.
- What’s my ethnicity?
- CarrierMap does not assess a patient’s ethnicity. It is designed to detect specific genetic mutations documented to cause known genetic conditions.
- Can these results affect my insurance coverage or employment? What about my kids?
- Aaah, let me introduce you to GINA.
I believe the Coalition for Genetic Fairness said it best:
The benefits of integrating genetic information into health management are tremendous. It enables individuals and families to make proactive and informed decisions. Knowledge about one’s genes can be invaluable to the delivery of healthcare services. However, that knowledge is also susceptible to misuse. Because no one is exempt from this harm–each of us carries a number of mutated genes–genetic discrimination is a potential concern for everyone.
The Genetic Information Nondiscrimination Act (GINA) is a federal law designed to protect people in the United States from genetic discrimination by health insurance companies and employers.
Genetic discrimination is exactly what it sounds like; the differential treatment of those who have a genetic mutation that causes or increases their risk for an inherited disorder.
This law makes it illegal for (1) health insurance providers to use or require genetic information to make decisions about a person’s insurance eligibility or coverage and (2) employers to use a person’s genetic information when making decisions about hiring, promotion, and several other terms of employment. Both pieces of this law have been in effect since 2009.
GINA does not extend to life insurance companies, long-term care, or disability insurance. Therefore, these companies can still ask about health, family history of disease, or genetic information, and reject individuals that are deemed too risky.
GINA also does not extend to discrimination in the education system. . . yet. But a landmark case is attempting to set this precedent. As the field of genomic medicine is changing, so are the legalities that govern it. We can only hope that the former does not outpace the latter, for everyone’s sake.