"But what if the company finds out what you did?" I asked.
"How would they? If they ask, 'Have you ever had genetic testing?' I'll just say 'no' "
I understood her concern. Discrimination is possible.
But she would also hide the genetic test results from her doctor, since if he knew them he would ordinarily put them in her medical record.
Some other patients who have done testing on their own and learned they have lethal mutations have told their physicians, "Here is information. But I don't want you to put it in my chart" -- placing these doctors in a difficult spot.
Medical records are supposed to contain all relevant information to help providers in the future decide how best to diagnose and treat patients. If, for instance, the patient comes to an emergency room in the middle of the night, the doctor on call should ideally have all relevant medical information. Patients who hide pertinent information could suffer later.
Health insurance companies usually cover certain genetic testing as part of treatment (though they often pay little, if anything, for genetic counseling that is involved); and the results then enter the patient's medical chart. But many people undergo genetic testing on their own and pay out of pocket, allowing them to keep the result to themselves.
The Affordable Care Act covers certain genetic tests, such as those for breast cancer that can lead to clear benefits for the patient; but not for other tests, such as that for Alzheimer's disease.
The Genetic Information Nondiscrimination Act (GINA) covers most forms of health insurance and employment. But it's a different story with other types of insurance. Life, disability and long-term care insurance companies
are legally allowed to discriminate based on people's genes.
These types of insurance are essentially shared goods and, ideally, based on principles of fairness. None of us know if or when we are going to need them -- get an awful debilitating disease and/or die at a relatively young age. So, in buying insurance, we hedge our bets. We each put in a certain amount of money. Those of us who, unfortunately, become disabled, need long term care or die young, benefit -- it could be you, me or neither of us. None of us have strong data in advance to know one way or the other.
Unless perhaps you secretly undergo genetic testing.
I appreciated the honesty of the woman who told me about her decision to get tested. But her views troubled me. I felt torn. If she lacked the mutation, she wouldn't buy any insurance. She is hardly alone. Studies have shown
that people who have the gene associated with Alzheimer's disease are over twice as likely to buy more life insurance or intended to do so.
But wasn't she taking advantage of the system by gaming it? Or were insurance companies otherwise going to take advantage of her?
President Obama's recent announcement to launch a personalized medicine initiative and sequence the whole genomes of 1 million Americans promises to help countless lives. Many additional patients will undoubtedly also get sequenced by their physicians, hoping to diagnose and treat disease. These exciting developments make the issues even more important to consider now.
Life insurance companies are getting concerned about these matters
. We all possess genes associated to some degree with illness. If enough consumers secretly get tested and decide whether to buy insurance based on the results, these companies would probably go bankrupt.
These companies are weighing
what to do. They could ask if applicants or relatives have undergone genetic testing; and then raise insurance rates on certain individuals, based on the results. They could also require genetic testing of all applicants and assess the results. Yet in both of these scenarios, they could end up unfairly discriminating -- denying coverage or charging much more for it -- for anyone with genes associated, even slightly, with serious disease.
The European Union placed a moratorium on these decisions until 2017, but what should we do in the United States?
The outcomes of these debates will affect countless Americans. Vermont and a few other states
have passed laws, restricting insurers' use of genetic tests concerning particular diseases, or in general; but most states have done nothing.
We could let these corporations get all genetic information, get none, or get a little bit. The government could bar companies from looking at any genetic information; but people with dangerous mutations would probably then buy more insurance, and others would buy less. These insurance companies would lose money, and likely increase rates for everyone. Many Americans would not like some people gaming the system; but we need more research to see if that is the case, and what people think is fair.
Alternatively, we could allow companies to test for certain clearly predictive mutations that lack treatment. Unfortunately, individuals who have these genes would then be denied coverage or face much higher premiums.
A third, and perhaps best, solution would be to give everyone a certain amount of life insurance, so as to average out the risks across everyone. People who want more insurance could apply for more, but companies could then request testing for certain pre-determined genes that highly predict serious, untreatable diseases.
These dilemmas pit patients' rights to confidentiality against whatever social good insurance companies may provide. We should try to reach some consensus to avoid unfairness on either side. Genetic testing will aid the lives of millions, but also poses quandaries that need to be addressed sooner rather than later.