Ethical implications of genetic testing
Margaret R. McLean is the director of Bioethics and the associate director of the Markkula Center for Applied Ethics. Views are her own.
Amaze your relatives and yourself with a unique holiday gift—unearth ethnic origins, find unknown relatives, discover that your crazy uncle is actually a bit Neanderthal, know who’s at risk for late-onset Alzheimer’s disease or age-related macular degeneration. All of this—and more—is available from companies such as 23&Me and Ancestry offering in-home genetic test kits.
In response to genetic testing CyberMonday deals and holiday hype, Senator Chuck Schumer warned that, “what those companies can do with all that data, our sensitive and deepest information, your genetics, is not clear and in some cases not fair and not right." He urged the Federal Trade Commission to ensure that consumer genetics companies' privacy policies are transparent and fair.
Schumer has raised a critical ethical concern regarding genetic testing—just who has access to this most intimate of information? Is genetic testing a mere game of discovery or is there something about this deepest information that requires our deepest thinking—requires us to think about the benefit and harm of knowing our roots and perhaps our future health status and to question who should know our test results, whether we spit in a cup at home or in the doctor’s office.
This is not the first time that legislators have been concerned about privacy and genetic discrimination. In 2008, Congress passed the Genetic Information Nondiscrimination Act, GINA, which protects us from genetic discrimination in employment and health insurance. Employers cannot use genetic information in hiring, firing, promotion, or compensation decisions. Genetic test results cannot affect health insurance eligibility, premiums, co-pays, or coverage.
Notably absent from GINA’s protection are life, disability, and long term care insurance. As any of us who have applied for these types of insurance know, companies selling these policies can check our weight, ask about health status, and take potential future health challenges into account when determining eligibility and price. It took me years and reams of letters to my insurer before I qualified for disability insurance after an incidental finding on a CT scan.
Genetic testing leaves us facing an ethical conundrum that cuts both ways. On the one hand, genealogy can be fun—am I really as Irish as I think I am? And, knowing my risk for gene-associated disease can push me to take better care of myself, to see my doctor more often. On the other hand, will I be able to afford—or even purchase—insurance given my possibly problematic genetic profile? And, suppose I learn that a medical condition that has no treatment or cure awaits me?
Certainly, some people avoid tests for disease-associated genes even when beneficial because they simply don’t want to gaze into the crystal ball or fear losing insurance eligibility. Others, however, are drawn to genetic testing so that they can quickly “do something,” including purchasing long-term care insurance should a “bad gene” turn up. Ironically, both of these behaviors could destabilize the risk pool on which the availability and affordability of insurance rests.
So before you wrap that genetic testing kit for your crazy uncle, take a moment to consider what he might do with the information it provides and, more importantly, what the genetic testing company might do with his genetic profile. Consider how we as a society might harness genetic deep knowledge to make something better of the world and of ourselves.