The Ethics of Precision Medicine: The Challenges of Implementation for Cancer Patients
With recent advancements in technology, the field of precision medicine has grown significantly, and healthcare workers have a new suite of technologies available for their usage. The concept of precision medicine takes into account countless factors about the patient in question and allows for a more personalized, targeted form of care. One field that precision medicine is already being used in is oncology, a field whose cases are highly-patient specific. This field serves as the prototype of how precision medicine can be used in other areas of medicine, and for better or for worse, will be the first field to face the ethical concerns regarding precision medicine.
One of the key issues with precision medicine in oncology stems from usage of the technology; when physicians study the makeup of a tumor cell to understand how to best adjust their treatment strategies, they unintentionally uncover other information about the patient. These findings, termed “incidental findings,” have been the center of a heated debate regarding patients’ “right to know.” While researchers who stumble into these discoveries have no obligation to report to patients about their incidental findings, with their goal being the creation of general results and not individual results, both physicians and researchers have seen recent pushes to return to patients both actionable and non-actionable incidental findings. In a survey of almost 15,000 people, 92% of participants responded that they would like to see actionable results and 70% of participants responded that they would like to see unactionable results as well.1 Yet, the ideas of the “right not to know” suggest that physicians and researchers should report only what is necessary, which in this case would be cancer related mutations. With various ethical organizations varying in their recommendations for handling these incidental findings, physicians and researchers are often left to simply proceed with caution and act in a way that helps the patient most.1 The “right to know” and the “right not to know” stem from our current and historical preferences and abilities, and play a critical role in the ethics of precision cancer medicine, and are just one of countless ethical challenges.
While there are many challenges for physicians and researchers alike, many challenges stem from their differing goals and perspectives. As seen in the case above with incidental findings, physicians and researchers often have different goals; physicians strive to make choices to ensure that their patient is treated fairly and effectively, while researchers make decisions to ensure that the work they do is both impactful and generalizable. These two different mindsets reveal the crux of the issue with precision cancer medicine: the usage of patient data. Precision medicine, among many other computational tools, is best aided when researchers have access to as much data as possible to learn from and optimize their systems.2 Researchers will almost always gather as much data from as many patients as possible, but physicians will push to ensure that their patients’ data is confidential. While both researchers and doctors are guided by ethics, their ethical principles are often different, and are representative of their goals; doctors are responsible for maintaining clinical practices and high standards of care, whereas researchers are responsible for pushing the field, developing the tools to better treat patients, and in general, good scientific practices.1,2 These different mindsets serve as the basis for many ethical concerns regarding precision medicine, from release of patients’ records and data, informed consent, and other privacy concerns. To best ensure that both fields are improving and successful, a balance needs to be reached to ensure that physicians can ensure the best for their patients and researchers can ensure that their work can improve current practices.
The field of precision cancer medicine is incredibly complex, both in the technical sense and the ethical sense. There are countless ethical issues that stem from both the information in the findings from patients, and the findings themselves. With oncology serving as a forefront in the field of precision medicine, the advancements in scientific and ethical practices in this field will be widespread, further emphasizing the need to ensure that these issues are resolved.2 With researchers and physicians currently having different outlooks, the medical field as a whole must push to strike a balance between the two spheres, and to ensure that the best is achieved for current and future patients.
Edited By: Rishi Chilappa
Graphic Created By: Acelo Worku
Winkler EC, Knoppers BM. Ethical challenges of precision cancer medicine. Semin Cancer Biol. 2020 Oct 9:S1044-579X(20)30201-7. doi: 10.1016/j.semcancer.2020.09.009. Epub ahead of print. PMID: 33045356.
Korngiebel DM, Thummel KE, Burke W. Implementing Precision Medicine: The Ethical Challenges. Trends Pharmacol Sci. 2017;38(1):8-14. doi:10.1016/j.tips.2016.11.007