To know or not to know. That is the question. Should a doctor inform a patient about incidental findings if one is found while testing for a different disease or genetic marker?
The question is about the patient’s right not to know, not be tested for incidental findings, and how a patient will handle information. By testing for anything other than what the patient went in to be tested for the argument lies in where is the right to consent, opt out, or not know what other issues may exist. If the disease found does not have a cure, is it right to tell a patient and make them a patient in waiting? What rights and what kind of consent does a patient have when it comes to genetic testing? Are we doing the patient a favor by testing for more than they thought they were being tested for?
Some argue that other incidental findings are found because they are being looked for. When looking at an x-ray if a tumor is found it is because it is being looked for to help explain why a patient is suffering from certain symptoms. In testing, the patient agrees to certain tests to be performed but does not expect other tests to be run. Running tests for other illnesses is not the same as seeing a tumor on an x-ray.
Ethics and science intersect when humans are involved. Consent to testing, the need to test, and the findings that may come from testing all can affect how research, science, and issues evolve. Testing without consent or adding tests without consent are issues that can determine scientific findings and ethical issues within the research world. What benefits the patient and what hurts the patient is a debate that may go on forever with each camp firmly planted in what they see as just and beneficial to the patient.
Doctors and researchers have the interest of the patient in mind but I believe that they diverge at times in the delivery of the information and the means used to gain the information. Clinical medicine is still defined as “the diagnosis and treatment of disease and the maintenance of health (1).” While genomic research is defined as “[n]ext-generation genomic technologies [that] allow clinicians and biomedical researchers to drastically increase the amount of genomic data collected on large study populations. When combined with new informatics approaches that integrate many kinds of data with genomic data in disease research, allowing researchers to better understand the genetic basis of drug response and disease” (1). Ultimately, one looks at the individual while the other looks at large scale populations.
I go back and forth on what patients should be told and not told. Maybe the better question is should practitioners ask patients what they want to be told? I think that some may not want the information and may later decide to go ahead and find out. Some may never want it or be able to handle the information while others may not care if they know now or later. It should be up to the individual to decide what they learn about themselves.
References
- The Free Dictionary Online, s.v. “Medicine,” accessed August 7, 2017, http://medical-dictionary.thefreedictionary.com/medicine.
- Feero, W. Gregory; Alan E. Guttmacher; Christopher J. O'Donnell; Elizabeth G. Nabel (2011-12-01). "Genomic Medicine: Genomics of Cardiovascular Disease". The New England Journal of Medicine 365 (22): 2098–109.