Here is a not altogether implausible scenario from a possible not-too-distant future.
You’re a 30-year-old U. S. woman who has recently been diagnosed with breast cancer. You are too old to be covered by your parents’ health insurance, and you don’t yet work for a firm that has health-care coverage, so you have applied for health insurance under a new Federal insurance-exchange program. As a condition of receiving coverage, you must supply a mouth swab which provides a DNA sample. A few weeks later, the results come back: because you have a hitherto undiscovered genetic defect that puts you at a high risk of developing Alzheimer’s disease at an early age, you are eligible for a mastectomy, but not chemotherapy. According to a utilitarian calculation by a government bureaucracy, you will die of Alzheimer’s well before your breast cancer would recur without the added prevention provided by chemo.
Now, if the insurer were a private company, the scenario I just described would be illegal, at least according to a recent Associated Press article on the potential pitfalls of inexpensive human genome sequencing. “Discrimination” by either employers or health insurance companies based on a person’s DNA information is a violation of Federal law. But just as it’s illegal for you and me to print money, but perfectly legal for the government to print money, there may come a time when the government deems it necessary to analyze your DNA for reasons of “efficiency” or “cost-effectiveness.”
It is truly amazing how rapidly a feat which was once hailed as one of the most difficult achievements in the history of humanity is now something that may cost as little as $1,000 in a few years. Of course, we are not really comparing apples and oranges here, because it’s one thing to read out all the 1’s and 0’s (to use computer language) of a person’s DNA, and another thing altogether to know what it means. And technically, the human genome sequencers aren’t really finished even now, more than a decade after a “working draft” was published in 2000. Figuring out what the human genome is saying is one of the hottest topics in molecular biology, and more is being learned every day. But enough is known already so that dozens of genetically-related diseases can now be tested for. And with that ability come a host of ethical issues.
Insurance companies rely on accurate calculation of risks faced by their customers in the average or statistical sense. That’s how they stay in business, by making educated guesses as to who is likely to die when, who is more likely to need what medical treatment, and so on. Nobody gets upset when a life-insurance firm wants to charge an 80-year old more than a 20-year old for a $100,000 life-insurance policy. Decades of actuarial data (and common sense) show that the octogenarian is much more likely to “assume room temperature” (in Kinky Friedman’s phrase) sooner than the college-age kid. And believe it or not, there was a time when the kind of actuarial or statistical calculation that prudently apportions insurance rates to risk was regarded as advanced scientific knowledge. For all I know, some people opposed the use of obscure calculations of actuarial science for pricing insurance when these methods first arrived on the scene. But eventually, people realized that the advantage of having insurance was worth the trouble of paying different prices for it, and we got to where we are today.
Well, now we have some new advanced scientific knowledge about our DNA that can be obtained for a cost that falls every year, and it promises to tell us all sorts of things about how long we might live and what we might die of. From the consumer’s point of view, especially if you are a consumer with a genetic malady that could cost some health insurer millions, it makes sense to pass a law forbidding discrimination on the basis of genetic testing. But to be entirely consistent, it seems to me, they shouldn’t have stopped there. They should have rescinded all the variations in the price of all kinds of insurance based on things like whether you smoke, how safely you drive, or how old you are.
The reason they didn’t, is because imposing a completely uniform rate on everybody for a class of insurance without taking advantage of any of the data that allows companies to predict risk, is like blindfolding a man and then telling him to go find his car keys. Maybe he’ll find them eventually by feeling every square inch of the house, but it will take him a lot longer than if you let him look. And if private insurers can’t use additional information to predict risk, they will have to raise rates on almost everybody, because they have to deal with worst-case situations that they could avoid with more information. But what’s crazy for a private company is done all the time by government, and so what we’ve prohibited from coming in the front door—discrimination based on DNA testing—is very likely to sneak around and come in by the back door when even the government finds that ignoring DNA data is a very costly thing to do. Hence the sneakers of the title (I had to work it in somewhere).
What’s the answer? I don’t have one. Not every ethical dilemma posed by a new technological development has an easy answer, or even a logical hard answer. We as a society have spent billions of dollars developing the ability to decode our own genes. We have let that particular genie (pardon the expression) out of the bottle, and like Pandora, many of us will not be able to resist the temptation to pay whatever the market will bear to find out what our genes bode for our future. But very little of what genetic testing tells you is a certainty. And even lives cut short or debilitated by genetic disease can be worth living—ask Stephen Hawking, who has a type of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and has been wheelchair-bound and almost paralyzed for many decades. Yet he has won a dozen or more international prizes for his groundbreaking work in theoretical physics, has married twice, and has been portrayed on Broadway. Hawking should thank God that genetic testing for ALS wasn’t available when his mother was pregnant. England’s National Health Services might have saved a few bucks if Hawking had been aborted, but the world would have been much poorer as a result.
Sources: The article “Panel: Genetics needs ethics rules” by Lauran Neergaard appeared in the Oct. 14, 2012 edition of the Austin American-Statesman, p. A7. I referred to articles in Wikipedia on Stephen Hawking and the Human Genome Project.
This article first appeared on http://engineeringethicsblog.blogspot.com/
Karl Stephan has worked in the industry as a consulting engineer. He currently teaches college-level engineering courses at Texas State University in San Marcos, Texas.