Genetic testing, the Affordable Care Act, Ethics and You

In Slate, science writer Virginia Hughes published an essay decrying what she sees as superfluous or even harmful discussions around the ethics of genetic testing. She says, rightly, that some ethicists are discussing the wisdom of closing the door on testing after the “personal genomics horse has bolted.” It is true that genetic testing is here and will not go away, but we certainly haven’t worked through all the challenges posed by testing, information-management, and client care.

One of the major ethical challenges of testing, I hope, is being helped by passage of the Affordable Care Act. Starting in 2014, patients with preexisting conditions in the US will be able to purchase health care insurance through affordable insurance exchanges. Currently, though, one fear of testing is that it would reveal preexisting conditions that would otherwise be invisible and make it impossible for some people to get insurance coverage even while healthy.

Hughes hardly mentions that particular reason for the concerns related to testing.  She says in one sentence, “Would adding this data to someone’s medical record affect health insurance rates?” After raising this question, she neither answers it nor discusses it. I would think the ability to buy and afford health insurance is one of the major concerns for patients who consider the risk of exposing genetic determinants of future diseases. Medical testing is assumed to be confidential, but patient records are, of course, shared with insurance companies.

Another concern for people considering genetic testing is that the information revealed by the tests may lead to discrimination in employment. Without legal protections in place to ensure that employees are protected in the event a genetic test reveals a likelihood of future illness or disability, concerns about having the information available are quite rational.

Setting aside concerns about insurance and employment, which are monumental, Hughes addresses the issue of how information may harm patients. She is of the mind that full disclosure is always the best policy for health-care providers. The question of when it is appropriate to withhold health information from patients seemed to arise as soon as anyone began providing health care. The question has been around so long, of course, because it is both extremely important and because different patients express extremely divergent preferences. While some want full disclosure, others would prefer to be left to enjoy their lives ignorant of impending doom.

The most confusing part of Hughes’ essay is when she states, “While wasting time debating ethical dilemmas, the medical community has neglected to talk about more pressing logistical problems: 1) How to ask people ahead of time what, precisely, they want to know (and don’t want to know); and 2) How to improve the medical system so doctors can follow through on those wishes.” The two “logistical problems” she identifies are exactly the kinds of concerns expressed by the “ethical dilemmas” noted by ethicists. Yes, what is the best way for doctors to give patients exactly the kind of information they want without revealing unwanted information? These are the ethical dilemmas ethicists are wasting time debating.