Case Study in Genetic Non Disclosure
Introduction
To date, over 10,000 genetic tests are available to predict and diagnosis diseases that range from alopecia universalis to ZNF674-related X-linked mental retardation. As these tests become more common, it is reasonable to expect that many people will learn they are at risk for a genetic condition, serious or otherwise. Some diseases can be mitigated or delayed with lifestyle changes, such as reducing sugar intake for controlling diabetes, but many cannot. Additionally, in most conditions a particular "disease gene" is only one piece of the puzzle. An individual that carries a genetic mutation may have an increased risk of a disease, but they may never be affected. As a result, patients are often left with unanswerable questions, chiefly "What am I supposed to do?". Should career or retirement plans be changed based on an eventuality that may not happen? What if others are potentially impacted by your decision?
Case Study
After many years of blight, Detroit civic leaders are attempting urban revitalization by building a state-of-the-art charter school to attract a diverse student population from the city center and surrounding suburbs. This plan will require the school district to hire a number of bus drivers to transport the students. David French, a 56-year-old who was laid-off from a mid-level administrative job in the auto industry five years ago, decides to apply for a position. David was an exemplary employee at his previous job, and his references are very enthusiastic. David does not disclose to the school district that he carries a variant of a gene called SCN1A, which predisposes him to seizures. He sought genetic testing because
David is in a legal, if not moral, void. Please take our poll below and leave a comment to start this important conversation.
References:
Miller, I.O. and Sotero de Menezes, M.A. SCN1A-Related Seizure Disorders. GeneReviews (2014).
State of MIchigan. What Every Driver Should Know (2012)
Image Credit to John (via Flickr)
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Unless a General Practitioner certifies that he has epilepsy there may not be a legal case to deny David French the driver job.
Or to what extent can we investigate if David has atleast one seizure if he is with-holding such information.
In real-life situations many people hide their health circumstances and might also perform their jobs efficiently.
Is it legal to certify a person by the " propensity" of him having a disease based on a gene OR by symptoms that arise because of CAUSALITY of the disease gene.
How does the FDA support a diagnosis. Is it substantiated by a defective gene or adverse symptoms of a defect.
We need to wait a long time till such questions become valid. Valid I mean when everybody's genetic profile is available officially as a government database. And when FDA approves such and such genetic diagnosis by doctors to patients.
Such approval is not easy. Many of the disease genes in published articles have "incomplete dominance". We have recently witnessed 23&Me take a corrective step by totally stopping 'diagnosis like information' in their genetic profile product for individuals. The FDA has warned them against such practice.
Difficult issue (of course). I think that a legal presumption may be informative. In terms of civil law, a violation of a statute may justify an inference of negligence, but compliance with the statute does not necessarily indicate the absence of negligence. In other word, even though Michigan law does not prohibit David from acquiring a license to drive school buses and there is no requirement that his physician report his condition to the state as an "unfit" driver, David may nonetheless be negligent. That is, if he obtains his license, drives a bus and has an accident that is casually related to his underlying condition, he may be liable in the eyes of the law----and in the opinions of many lay people I would think.
A crucial issue, it seems to me, is the meaning of the word "predisposition." To say a person is "predisposed" to something is to say that given certain conditions the trait is likely to materialize. Further, David's family history includes seizure disorders, and he has the SCN1A gene. Given these factors, what is the likelihood that he will experience a seizure during his employment as a school bus driver?
