Privacy and Ethics in Medical Testing

Ethics Incidental findings are fairly common in the course of medical testing, occurring in around one-third of all tests (Ofri, no date). Yet, the medical field is torn about what the ethical implications of such findings are. In particular, it can be difficult to determine whether reporting such findings is important, and therefore medical practice seeks to establish a threshold of what should and should not be reported. This particular finding, that the son is not the biological son of the father, does not appear to be medically relevant.

First, it is not relevant to the question at hand, which is whether the people in the family have the marker for Huntington's Disease. The child could or could not, and his parentage is not relevant to that question. Second, who is or is not his biological father is not a matter of medical health, and especially not an immediate matter.

A lot of the discourse surrounding the issue is more related to things like finding genetic defects -- issues that could affect a patient at some point in his/her life. This is not one of those issues (Illes & Kirschen, 2014). The issue may actually be known to the entire family anyway. It is important for medical staff to have a plan to deal with incidental findings, so that some sort of consistent response is available.

Moreover, if the medical team is able to communicate to patients ahead of time what the policies are with respect to incidental findings, that will put patients at ease, knowing what a medical practitioner may or may not disclose. This is where the ethics of disclosure bump up against the ethics of patient privacy. For example, if they are testing for Huntington's Disease, then the relevant question pertains to that disease, and if that is the medical question then that is the answer that Boyd is required to disclose.

That Boyd has come across other information puts her in a position where she at the very least would need to discuss with the family whether they want to know other things that have been learned. The literature that surrounds testing for Huntington's in particular talks about letting people know that they are carriers. Increased suicides are associated with people finding out that they are carriers, knowing that they will acquire this disease in the future and face its consequences (Meiser & Dunn, 2000).

There is less discussion about situations that arise when that testing reveals other things, such as parentage. Patient privacy demands that even if this information is uncovered, that Boyd is obligated to maintain privacy. Where privacy considerations can be overruled is in instances where one's health is at risk, which is not the case here. This is not Maury Povich, this is a medical clinic. While the resources on the subject do not provide guidance, common sense does.

Boyd has no obligation to report anything to anybody, other than to answer the question about whether Roger Jr. has this gene. Even though Huntington's is hereditary, that does not mean the child will have the gene. Boyd is obligated to report that. It is also worth noting that Boyd does not need to specifically report on the finding that Roger Sr. is not the biological father.

Boyd can simply have the results of the test in the file, which is obligated because those tests are part of the medical history of the patient, without going out of her way to point out that Roger Sr. is not the father. The tests can speak for themselves on that matter. If at some point the child turns 18 and wishes to learn about his parentage, then maybe that information can be.