Case Study in the Right NOT to Know
By Laura Rivard
Introduction
Advances in genetics are rapidly expanding the list of
diseases and conditions that genetic tests are available for. Some of these
conditions are trivial, like whether your earwax is “wet” or “dry”. Others
are potentially life threatening but treatable, like breast cancer caused by a
mutation in the gene BRCA1. Still
others are fatal and have no cure, such as Huntington’s
disease. The decision to pursue, or not pursue, genetic testing is very
personal. Those that seek genetic testing cite numerous reasons, including, but
not limited to, decisions about reproduction, plans for extra preventative
medical screening, and “peace of mind”; for some, uncertainty is very
disruptive. Those that intentionally avoid genetic testing also have compelling
reasons. One of the most commonly given is that knowledge of an impending
disease is so psychologically damaging that it will negatively impact the
quality of life of an individual even before the disease sets in.
The first principle of biomedical ethics is respect for autonomy.
This principle is a recognition of individual rights, and healthcare providers are
directed to appreciate a patient’s free will.
However, when genetic testing is involved, so is a family, since family
members share genes. In some cases, one patient’s “right to know” may be in
direct conflict with a family member’s “right NOT to know”. Physicians are stuck in the middle of this disagreement.
Whose rights are supreme? When the condition in question is treatable, the principle of
nonmaleficience (do no harm) would seem to favor “the right to know”.
However, when the condition in question is not treatable, the best course of
action is not clear.
Case Study
This is a tough case, and rational people will likely
disagree. Please take our poll and leave a comment to explain your point of
view.
Image credit to the U.S. National Library of Medicine (via
NPR)
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Bryce has both a moral and legal a right to determine his status regarding ALS. Bryce's test results would be confidential. Whether or not he informs Joan of the results is his decision to make. He should respect Joan's wish not to be informed. Of course, if Bryce suddenly quits school and embarks on a trip around the world, Joan will infer the nature of the test results. It seems to me that this risk is unavoidable.
Right "not to know" is a tricky one. Really hard to untether family members who share large % of genetic material. Basically impossible to treat any of this in isolation. Seems like something that counselors can help more with than doctors, since there is no decision about testing itself that will not do harm.
For this case, I considered the principle of do no harm/do good. I decided that Bryce could still live a good life without the information. Shouldn't we all be trying to live our "best life" whether or not we know it will be shortened by disease? However, Joan would almost certainly be harmed by receiving the information. But, for me, it wasn't an easy choice knowing that only one person's needs could be met.
