By Jay Cleary, President of Bridge Financial Group

Imagine you’re at high risk for a serious disease like Alzheimer’s or colon cancer. Maybe a parent or grandparent had it, you saw the devastating effects first-hand, and you’re conflicted about whether you even want to know if you carry the genetic propensity for the disease.

Now think a little further. If you undertake a battery of genetic tests — at a high-end medical clinic, for example — the results are added to your permanent health records. And if those records indicate you’re at risk for any kind of life-threatening illness or condition, you could be in for a nasty surprise — like when you try to obtain life insurance down the road for your family.

Privacy rights around genetic testing are murky at best. Two companies that use DNA to allow consumers to research their ancestry — Ancestry.com and 23andme — have been approached by law enforcement officials who wanted access to their databases for criminal investigations, the AP reported recently.

But even if you are not worried about criminal investigation, you may still have serious privacy concerns that tie into your financial future.

Under federal law, health insurance providers are not allowed to discriminate due to genetic risks. But long-term-care and life insurers do not face such national regulation.

To make matters more complex, laws and regulations vary by state, and the way insurers view revealing genetic information varies from carrier to carrier.

Health and mortality are already emotionally charged topics. Add the possibility of increased rates or un-insurability for people with a genetic issue, and the ‘testing results’ conundrum becomes a difficult challenge to solve.

Given all the uncertainty, anyone who suspects they have a possible genetic anomaly or predisposition have some important homework to do:

Decide if you really want to know. Many individuals say they’re not sure if they really want to know if they carry a significant genetic health risk. There’s no easy or “right” answer either, so your first step must be to make this call for yourself. Start by taking the financial factors out of the decision — the emotional concerns are the biggest and toughest to deal with, so that’s where you need to start. In most cases, genetic anomalies mean an increased chance of getting a given disease — not a written-in-stone certainty that you will get it. Even so, would knowing render you more in control with an ability to manage risk, like with heart disease, or simply give you an incurable and frightening future to ponder, like with Alzheimer’s? And are you the type to take action in the face of a threat?

Check your state’s laws. At this writing, it is illegal for life or long-term care insurance providers to discriminate based on genetic information in Oregon, California and Vermont. Similar legislation is being considered in other states, too. In some states, such as Massachusetts, there is at least one insurer that asks explicitly to see the results of genetic testing. Nationally, most insurance carriers are currently not asking for this data, but all do ask for your medical records. If you’ve shared that information with your doctor, it’s going to be in those records.

For long-term care or life insurance issues, get clear on timing. If you’re worried about a condition that does not have an associated medical treatment, but which would increase your need for disability or long-term care insurance, you are in the murkiest waters of all. The best advice is: Insure first, test after. If you know you have a genetic risk and fail to disclose it when applying for coverage, that coverage could be at risk. Life insurance policies contain a clause stating applicants who intentionally omit material information during the underwriting process can have their settlements denied or reduced.

Don’t fear for your health insurance coverage. The Genetic Information Nondiscrimination Act (GINA) is a federal law that makes it illegal for health insurers to raise rates or to deny coverage because of someone’s genetic code. Under GINA it’s also illegal for an employer to fire someone based on his or her genes. GINA doesn’t cover life or long-term disability insurance, though, so that risk gap remains.

The first full gene sequencing process cost about $2 billion; today it costs less than $1,000. While exciting new health care efforts are focused on using this low-cost, valuable information to make long-term medical care more effective and personalized, the new science has created some awkward gaps. Life insurance carriers do not want their clients knowing considerably more about their longevity than they do. On the other hand, the carriers have a strong financial interest in seeing their clients live longer.

Until new policies fall into place, providing clarity about how to deal with these issues and protect privacy in the process, proceed with caution. Be thoughtful before making unintended disclosures that could harm your family’s long-term interests.

Jay Cleary is President of Bridge Financial Group