What Caregivers Should Know About Genetic Testing

Family coordinators of care often help loved ones cope with difficult diseases.  With advancements in medicine some of these diseases can be tied to genetics causes.  If a family coordinator of care is a blood relative or offspring they should consider genetic testing.

A doctor may advise an ill loved one to get genetic testing.  If results come back positive for a gene tied to breast cancer for example, this can have implications on children and siblings, who have a 50% chance of carrying the same gene.  However, having a certain gene does not means that you will necessarily go on to develop that condition, it simply increases your risk.

The implications of genetic testing are not just health related but also financial.  It is not always covered by insurance and certain types of insurance may be more challenging to obtain after genetic testing regardless of the result.

In this post I want to provide a brief overview of what family caregivers should know about genetic testing.  I want to enable you to know where to go for information.  I want to empower you with important financial questions to discuss with your family.

Genetic Testing Today

About 700,000 Americans have had a portion or all of their DNA sequenced.  As costs decrease that number is likely to rise in future years.  While genetic testing is in relatively early stages, roughly 50 genes have been linked to different types of cancers (National Cancer Institute has more info) .

Typically your relative will be tested first to see if there is any reason for concern. Many cancers that appear to run in families have no inherited gene, and providers generally avoid testing healthy people with no known familial gene. A doctor can refer you to a genetic counselor, who will review your family history and discuss the implications of testing.

While the test itself is a simple blood test, the difficulty often lies in the psychological stress that the results may cause you and your relatives. A positive result may lead to more frequent screening tests and feelings of guilt, anxiety, and depression. Before you pursue genetic testing it is important to consider how you will use that information to make sure that it is truly beneficial for you and your family.

A popular example is BRCA1 and BRCA2, two genes with a strong link to breast and ovarian cancer.  Angelina Jolie has this gene and publicly spoke out about her choice to pursue a preventative double mastectomy and later the removal of her ovaries.

As we learn more about the genetics of certain health conditions, genetic testing may change. If you are curious about your genetic susceptibility of disease, a genetic counselor can help determine whether testing is beneficial.

Genetic Testing Is A Large Financial Decision

Mapping your genome costs around $1,000.  Some insurance companies will cover the testing but only if recommended by a doctor.

Costs will likely continue to decrease enabling more people to pay for it out of pocket.  The largest cost, however, is insurance.

In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA) to protect consumers from genetic discrimination. Medical insurance companies cannot take genetics into consideration when pricing or deciding on if to offer a policy.  Unfortunately, this law only includes health insurance and does not include life, disability, or long-term care insurance.

The implications are serious.  Individuals who have sought genetic testing may be rejected or charged higher premiums. To avoid these consequences, many obtain these insurance policies prior to testing.

The Future Of Insurance & Genetic Testing

It’s unclear how the financial industry will deal with genetic testing down the road, however, they are incented to learn as much as they can about their policy holders.

While many companies do not currently ask about genetic testing, this may change as it becomes more common. In a NYT article Dr. Green, a genetics researcher at Harvard Medical School, shared that an insurance company executive told him, ,“We would [ask about genetic testing], but we don’t want to be the first.”

Discuss the below questions before getting genetic testing:

  • What will I do with the results? Is the knowledge beneficial to me?
  • Is it covered by my insurance?
  • Do I already have disability, long-term care and life insurance?
  • If not, am I willing to accept the risk that I may not be able to get it?
  • How costly is it for me to buy insurance now?
  • What is the cost of potential additional screening tests should the result be positive?

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Published: September 17, 2015
By: JP Adams

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