By KARL STEPHAN, Consulting Engineer, Texas State University, San Marcos
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 1s and 0s (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.
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.
Please tune into the Chemical Equipment Daily for part two of this two-part piece. For more information, please visit http://engineeringethicsblog.blogspot.com/.